M281

*Several years ago I wrote a blog post called Anti-Kell Antibodies: Dr. Moise’s New Treatment and I promised to update the blog when there were new developments. This is the update 3 years in the making!

*Disclaimer: I am not a medical professional. This is what I understand about M281 and the phase 2 trial currently underway.

I like to think in pictures and stories, so I’ll share the scenario that comes to mind when I think of M281, a new drug currently being tested to treat severe alloimmunization and HDFN in pregnancy. Imagine a busy train track with trains coming and going every hour or so. Now imagine a toddler walking around exploring the train tracks, picking up rocks, stumbling and righting himself, following a passing airplane overhead with wide eyes. I’ll use a picture of my 20 month old, Callum just for a cute visual.

img_0550-e1559679432220.jpg

You hear a train approaching in the distance. What is your first reaction? Go get that baby off the tracks, right? It seems logical to protect the toddler from being hurt or killed before the injury happens. What if someone nearby said, “Oh, it’s fine. Let him do his thing and if he gets hit by the train we have medical professionals who can treat his wounds. There is a possibility of death but hopefully we can save him after he gets hit by the train.” No one in their right mind would stand by and let that scenario play out. Why not remove the baby from the area or at least put up a fence or other barrier to keep the baby away from the train track?

Sometimes it feels like the methods used at the moment to treat alloimmunization during pregnancy/HDFN are similar to the train track scenario. Instead of protecting the baby from the antibodies to begin with, the protocol is to wait until the baby is attacked by the antibodies and becomes anemic before stepping in to help. But this way of treating the disease has proven dangerous far too many times. Sometimes the baby dies before the doctors detect the fetal anemia or the anemia is so severe by the time they discover it that the baby can’t be saved (like in Lucy’s case.) Sometimes the fetal anemia is discovered but the doctors wait too long to do a transfusion and the baby dies. There can be complications from the IUT which can lead to premature delivery or death. Another complication is hyperbilirubinemia after birth which can lead to permanent brain damage if not treated quickly and aggressively. All of these tragedies could be avoided if we could figure out a way to “put up a fence” between the antibodies and the baby BEFORE the baby is attacked by the antibodies. What if there was a way to protect the baby from the injury in the first place instead of trying to treat the wounds afterwards? Well, Dr. Moise and some other brilliant people might have figured it out!

M281 is a drug that can potentially block a mother’s antibodies from going through the placenta to her baby during pregnancy. If the antibodies don’t get to the baby then there should be no fetal anemia, no IUTs, no fetal hydrops, no hyperbilirubinemia after birth, no death. This drug is still in the trial phase but it looks very promising and I am so excited to see how it might save lives in the future.

Since my original blog post in 2016, researchers have done drug studies on pregnant primates and non-pregnant humans to test for safety and efficacy of M281. They have studied the drug in human placentas in the lab too. To learn more about these studies you can check out these links:

Human Ex Vivo Placental Perfusion Model:

transplacentalarticle.pdf

http://ir.momentapharma.com/static-files/71c4376f-4984-419e-a0b1-430326783e99

First Human Study:

firstinhuman.pdf

Right now the phase 2 trial for pregnant women is open and they are accepting 15 trial participants worldwide. This trial is the first one to test M281 on pregnant women with severe HDFN/alloimmunization. Here is the link to the study details: https://clinicaltrials.gov/ct2/show/NCT03842189?cond=m281&rank=3

I wanted to answer some of the most common questions I have received about M281 here so that the information is easy to find. If you have other questions about the new treatment or about the drug trial you can come join our M281 Discussion Group on Facebook or you can email me at bethanysk55@yahoo.com or just ask your question here in the comments section. If you have specific questions about the trial here is the contact information for Momenta Pharmaceuticals:

Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT03842189

 Momenta General Queries +1 617-491-9700 ClinicalTrialInfo@momentapharma.com

Here are some of the most commonly asked questions:

How does the drug protect the baby from the antibodies?

M281 works in two ways to protect baby from the mother’s antibodies while in the womb. It lowers the mother’s overall antibody count and it blocks the antibodies from getting through the placenta to the baby.

How is the drug administered?

M281 is given via IV infusion once every week and the infusion takes about two hours.

Does the drug work for any antibody or just for certain ones?

The drug trial is only for women with anti-D or anti-Kell antibodies since those two are usually the most aggressive ones when it comes to HDFN and the study wants to specifically target the worst case scenarios before declaring that it works. But the drug does block all red cell antibodies from going through the placenta so if it does get approved and go on the market it will work for anyone with a red cell antibody.

Does the drug cause birth defects or dangerous side effects?

This is part of what they are trying to determine with the phase 2 trial on pregnant women but the previous studies did not find any evidence of birth defects or major negative side effects. The drug will be administered once the woman is in her second trimester so that alone is safer in regards to birth defects since those typically happen in the first trimester. Also, previous studies show little to no transfer of the drug to the fetus.

How is M281 different from IVIG?

If you read my post about Titers, Antigens and Sharks you might remember that the “shark cage” was IVIG which can be used in severe cases to protect the baby in utero from the antibodies early in pregnancy before IUTs are possible. IVIG stands for “intravenous immunoglobulin” and it is made up of thousands of people’s antibodies concentrated into a liquid given intravenously. Doctors still aren’t sure exactly how IVIG works to protect the baby but most doctors think the IVIG protects the baby in one or more of these three ways:

  1. It lowers the titer so that there are fewer antibodies present in the mother’s blood to attack the baby.
  2. It slows/prevents the antibodies from going through the placenta and attacking the baby’s red blood cells.
  3. It helps the baby fight off the antibodies that are attacking his red blood cells.

IVIG doesn’t completely block the antibodies from getting to the baby like M281 could but it does delay the attack. With my second and third sensitized pregnancies I had plasmapheresis and IVIG treatments which delayed the antibodies’ attack and saved my babies’ lives. Even with those life saving treatments Nora had seven transfusions total and Callum had six transfusions total as well as other interventions and medications, NICU, etc. The antibodies still wreaked havoc on my babies both in the womb and in the weeks following birth. IVIG is also very expensive and most countries will not approve it as a treatment for our disorder. Another down side of IVIG is that it usually comes with some pretty severe side effects for the mother. I had debilitating migraines, vomiting, rapid heart rate, difficulty breathing, back pain, muscle weakness, eczema and more. I also had to take more medications (mostly class C drugs for pregnancy) to manage the side effects. For the people who were given M281 in the previous human studies (non-pregnant) there were no significant side effects.

When will the drug be ready for public use?

I’m not sure if or when the drug will be available to the public. The next step is to complete the phase 2 trial which means following 15 women through their pregnancies and for six months after birth. Only once the drug is deemed effective and safe will they consider making it available to the public. Right now the estimated trial completion date is 2022.

If the drug blocks all maternal antibodies from going through the placenta, how does the baby get the good antibodies from the mother? Is the baby born without an immune system?

The drug does block even the “good” maternal antibodies from getting to the baby but the doctors have a solution for this. The plan is to induce labor/deliver at 37 weeks, so at 35 weeks they will stop the weekly M281 infusions to allow maternal IgG antibodies to transfer to the baby. The woman will receive IVIG to boost her antibody count (NOT her red cell antibody count though.) During the two weeks without the M281 infusions the MFMs will watch baby very closely to make sure he isn’t getting anemic. If baby is showing signs of anemia they will deliver. The baby will get mom’s antibodies for two weeks before birth. Once baby is born the doctor will test the cord blood to make sure baby’s IgG antibody levels are high enough. If they aren’t, they will give baby IVIG infusions to boost the antibody count and baby will have an efficient immune system.

Who can be included in the trial?

The doctors have very specific requirements for trial participants, all for good reasons. If you are interested in joining the study, contact your OB or MFM and have them contact Momenta Pharmaceuticals at +1 617-491-9700 or have them email Dr. Ken Moise at kenneth.j.moise@uth.tmc.edu  Here are SOME of the requirements for trial participants:

  • Age >18
  • English speaking
  • Singleton pregnancy
  • Gestation 8-13 weeks
  • Anti-D alloimmunization with a titer of at least 32 or Kell with a titer of at least 4.
  • Previous pregnancy with one of the following at 24 weeks or earlier- severe anemia at time of transfusion with hemoglobin less than 0.55, Hydrops Fetalis with elevated MCA over 1.5 MoM, fetal demise with pathology of the placenta/fetus consistent with severe HDFN (need records)
  • Evidence of immunity to certain diseases
  • No history of a clinically significant medical complication that would jeopardize the safety of the patient or her fetus (ex: pre-eclampsia, pregnancy induced hypertension, drug or alcohol abuse, etc.)

I will try to keep everyone updated on the new drug’s progress here on the blog and definitely on the M281 Discussion Group on Facebook so come join us there if you’re interested in following along!

 

Advertisements

Fetal Center Reunion

For the first time in my life, I have a 19 month old toddler and I am not pregnant. With all four of my other children by the time they were one and a half I was already pregnant with their younger sibling. As Callum grows it feels bizarre not to be growing as well with his younger sibling inside. There is a little bit of sadness but mostly a delicious freedom and ease to life, yes even with four kids. To be able to chase Callum or deal with a toddler melt down without fighting back nausea is such a relief. It makes this stage so much easier as a parent. I am enjoying my four kids so much and savoring the absence of emergency in our lives. I love having my body all to myself and being able to sleep through most nights without tending to a baby.

Our baby Callum is doing well and growing so fast. He was a late walker like Nora, but their personalities are more laid back so I’m guessing that is the reason they walked later than their big brothers. Liam walked at 11 months, Asher walked at 8-9 months, Nora walked at 14 months and Callum was 16 months. It’s fun to have all four kids now on their feet and somewhat independent. I am loving this stage of life with the chaos and the sweetness and the hilarity of young children.

In April we drove to Houston for the Fetal Center Reunion and it was a quick but wonderful trip. The last time we were in Houston was when Nora was a newborn. She was only about 4 days old when Josh and I woke up in the early morning hours in 2015, packed up our room at the Ronald McDonald House and drove out of the city towards Alabama. As we left, the sun was coming up and I looked in my rear view mirror at the city doused in morning light and I cried happy tears of disbelief. We had done it. God had done it. Nora was alive and I felt such a surge of love for the city of Houston, for all the miraculous things that had taken place there. So now to be back in Houston with bubbly Nora who never stopped talking the entire trip was very surreal and special. We stayed at an Air B&B in the medical district and visited some of our favorite places in the area. Again, it was surreal to be in these places where I had experienced such emotional turmoil four years prior, completely desperate for my baby girl’s survival. Now here she was playing with her brothers in the same spot, completely healthy and very much alive. I will never get over the miracle of her life and I will never stop telling of the wondrous things God did for us. He is such a faithful loving God, patient and kind and trustworthy. I truly have no good apart from Him.

Here are some pictures of Nora playing in the park in front of Children’s Memorial Hermann Hospital where she was born:

At the Fetal Center Reunion we got to see Dr. Moise and many of the other doctors and nurses who treated us during my pregnancy. I saw some of the women who coordinated my care during my pregnancy with Nora and some of the nurses and ultrasound technicians who monitored Nora every week in the womb and assisted during her intrauterine blood transfusions. All of these amazing people worked together to save Nora’s life and to see them all together again was so special to me. My gratitude overflowed. I’m actually tearing up right now typing this because these people mean so much to our family. It really did feel like a family reunion. They were all so sweet and happy to see Nora. Nora was excited to finally “meet” Dr. Moise (even though he had already met her when she was a baby obviously) and Callum loved Dr. Moise too even though he had no idea who he was. I loved seeing Callum with his namesake and Nora with her hero.

I also got to finally meet one of my most dearly loved fellow “ISO moms” Brittany Pineda. She reached out to me several years ago when she was pregnant with her son, Kristian, in her first known ISO pregnancy (anti-D.) I grieved and still grieve with her over the loss of her baby Kristian after his first IUT and encouraged her to try again for her rainbow baby. Long story short, she traveled to Houston for her treatment with her second son and Dr. Moise performed his earliest IUT on Brittany’s baby at 15 weeks. I think that week shaved about ten years off my life I was so anxious. Her miracle baby, Mikah Kristian Joseph was born after 9 IUTs and is now a healthy toddler. Brittany has always been such an inspiration to me and she encouraged me throughout my pregnancy with Callum too. Now our miracle boys share a middle name, Joseph, after our hero Dr. Moise. You can read more about Brittany’s story here in the Fetal Center Newsletter fetalnewsletter-1.pdf

After all of our history together, Brittany and I had never met in person outside of our cellphones. It was amazing to see her and her family face to face finally! Of course we both had to spend most of our time chasing after our toddlers but we got a little conversation in here and there. Here are a few pictures of our families together with Dr. Moise and at the Fetal Center Reunion:

img_9554.jpg

img_9543

Callum kept waving at Dr. Moise

Rainbow babies Nora and Mikah, 14 IUTs between the two of them at the Fetal Center:

It was really hard to get a picture of these two together since they NEVER stopped moving! Our boys, Callum Joseph Thomas and Mikah Kristian Joseph:

And of course our favorite part of Houston is always the Korean food:

 

Titers, Antigens and Sharks

Anti-Kell antibodies, along with the other red cell antibodies during pregnancy, can be very confusing and scary, especially when you are newly diagnosed and trying to figure out what is going on. Since the disorder is very rare, medical professionals don’t encounter it often and sometimes have to rely on their memory of what they learned about it in med school. Some of the most common misconceptions revolve around the antigen blood results, titers and MCA scans. I have been trying for years to come up with an analogy to easily illustrate how these things work together and I have finally found a pretty good one. Obviously it isn’t perfect but it’s the clearest one I’ve been able to come up with to represent these specifics facts. In this post I will be using anti-Kell antibodies as the illustration but the analogy can also be applied to the other red cell antibodies such as E, D, c, Jka, Jkb, Fya, Fyb, etc. So, here is my shark analogy:

gray_reef_shark_fish

The sharks represent the mother’s antibodies. They have the potential to be very dangerous, they are designed to attack and destroy. But this doesn’t necessarily mean that the baby will be attacked by the shark. Many of us have been in the ocean with sharks and not been attacked by sharks. Just because they are there it doesn’t mean that they will attack. For most people, the thought of sharks is terrifying and the thought of these antibodies possibly harming our babies is terrifying as well.

Let’s talk about the antigen first. The antigen is hereditary and is passed down from a parent. It isn’t dangerous, just a protein in your blood, similar to a blood type. If the baby has the antigen, passed down from his father, then that puts the baby in the ocean with the sharks. Still not necessarily getting attacked by the sharks but in the water and possibly in danger. If the baby did not get the antigen from the father, then the baby is on the beach, far back from the shoreline, playing peacefully in the sand or maybe taking a nap. The sharks are still in the water with all their muscle and sharp teeth, but the baby is way up on the land, completely out of harms way.

img_3078

Ironic picture of my baby who certainly wasn’t “safe on the beach” during my pregnancy

This is why it’s important to have the baby’s father tested for the Kell antigen. It’s obviously necessary to know whether your baby is in the water with the sharks or up on the beach playing peacefully in the sand. Many times I’ve been approached by nervous parents who tell me that the nurse or even the MFM has told them the antigen status of the father has no effect on the baby. Or they have been told, after the father’s test showed he is negative for the Kell antigen, that the baby could still be attacked by the mother’s antibodies. This is simply not true. There is no way a shark can attack a baby who is way back away from the water, on the sand. And there is no possible way for the antibodies to hurt your baby if the baby is Kell antigen negative. By the way, the mother is always Kell antigen negative since it is impossible to produce anti-Kell antibodies if you have the Kell antigen. This is why we always focus on the father’s Kell antigen status. If he is negative for the antigen we know that two negative parents cannot possibly pass down a gene to their baby that they themselves don’t have.

Ok, so if your baby’s Daddy is Kell antigen negative, your baby is safely playing on the beach and there is no need to worry about any sharks. If your baby’s Daddy is Kell antigen positive then it’s possible that your baby might be positive for the antigen as well. You can find out at 14 weeks by doing a non-invasive maternal blood test if your baby is Kell antigen positive or negative. The blood test can also be used to test for the E antigen and the c antigen. There is an even earlier maternal blood test to check the baby for the D antigen (rh.) For all other antibodies an amniocentesis can be done at 16 weeks to check baby for the antigen. So, what if my baby has the antigen? That means your baby is in the water with the sharks. In my analogy we are standing on the shoreline looking out at the ocean and the baby is under the water swimming around, much like they do in the womb. It’s very scary as a mother to know that your baby is under the water with the sharks and you can only gaze out anxiously at the surface of the water, unable to really check on the baby and see how he is doing.

sunset_beach_woman_silhouette

This is how it feels during a sensitized pregnancy. It is such a helpless, scary experience to know you can’t physically see or help your baby stay safe from the sharks. Thankfully, there are ways that our heroes, the medical community, can check on our babies and protect them from the sharks.

First, let’s talk about the titer. Your titer shows the amount of antibodies that are in your blood. The titer does not tell us anything about how our baby is doing under the water. Is baby being attacked? Is he struggling? Is he ok? Titer does not answer any of those questions. The only question the titer answers is “How many sharks are in the water with my baby?” Through years of research, doctors have come up with a critical titer for each antibody. The critical titer says, “Once there are this many sharks in the water with your baby, your baby is actually in danger of being attacked.” For most antibodies the critical titer is 16 and for Kell the critical titer is 4. A recent study also showed that Kell in particular can affect the baby at any titer, even titers below the critical threshold. Regardless of the type of antibody, even with a low titer, there is still at least one shark down there swimming around with your baby. Titers are helpful though, because they give an idea of how closely the baby should be watched and whether baby needs a shark cage or not. Only the babies in the most dire circumstance need a shark cage, but I’ll get to that later.

So, a very high titer means there are a lot of sharks down there with your baby, which does raise the chances of baby being attacked. My titer was 1,024 and all of my babies happened to have the Kell antigen, so with each pregnancy I had a baby swimming in shark infested waters. As expected, all three of them were attacked at some point. If you have a low titer, there are fewer sharks and a lower chance of being attacked. But it is still important to be vigilant just like you would if your baby was swimming around in the ocean with a couple of sharks out there.

MCA scans measure how fast your baby’s blood is flowing through the middle cerebral artery in the brain. The MCA scan will give you a PSV number, which is the speed at which your baby’s blood is flowing and if it is too fast, the doctors can be pretty certain that your baby is anemic. The PSV number can be converted to an MoM using this calculator. An MoM above 1.5 signals an anemic baby that needs help. So in our analogy, the MCA scans are the doctor’s way of going down under the water and getting eyes on baby. In our analogy the MCA scan answers the questions, “Is my baby being attacked by the sharks?” “Is my baby’s life in danger?” “Does my baby need help fighting off the sharks?” The MCA scans answer the important questions that regular ultrasounds and titers cannot answer. The real life questions the MCA scan answers are: “Is my baby anemic?” “How anemic is my baby?” “Does my baby need intervention in order to survive?” “Is my baby’s life in danger?” This is why MCA scans are so important. Would you be satisfied just knowing how many sharks are in the water? Or would you also like to know exactly how your baby is doing in the water and whether your baby needs help or not? Women with critical titers should have weekly MCA scans starting between 16-18 weeks. Thankfully, fetal anemia is treatable, but only if it is caught in time.

So, what if my baby is being attacked by the “sharks” and is anemic? The doctors can help the baby fight off the sharks by giving the baby blood through an intrauterine blood transfusion which helps keep the baby safe. Another way that doctors keep the baby safe is by monitoring closely and removing them from the shark infested waters as soon as it is safer for baby to be on the outside.

What about the shark cage mentioned before? I’m using the shark cage to represent IVIG given early in pregnancy. IVIG is usually given (often only at the mother’s prompting) to women who have had a previous loss or previous severely affected pregnancy, since it is obvious that the mother’s antibodies are very aggressive in those cases. But I am also seeing IVIG being offered more frequently to women who have no previous loss or even previous severely affected pregnancy but have very high titers, usually 256 or 512 and above. I think (just my personal opinion here) every woman with titers in the hundreds or thousands should be encouraged to start IVIG treatments early in the pregnancy (10-12 weeks) to protect their baby from their antibodies. The IVIG does act like a shark cage in our analogy by protecting the baby from the sharks that are swimming all around. IVIG delays and/or prevents fetal anemia and it is a good way to keep the baby safe in extreme cases. The shark cage protects the baby from being attacked whereas the more common approach just watches and waits for the baby to be attacked before stepping in and trying to help the baby. With both Nora and Callum we used the IVIG “shark cage” to protect them while they were in shark infested waters and that is why they are alive today. My doctors refused to even consider the IVIG shark cage for Lucy and that is why she was attacked so early and so viciously.

So here is a quick recap of the shark analogy:

ANTIBODIES=SHARKS

TITER=NUMBER OF SHARKS IN THE WATER

ANTIGEN NEGATIVE=BABY IS ON THE LAND

ANTIGEN POSITIVE=BABY IS IN THE WATER

MCA SCAN=DOCTOR GOES UNDER THE WATER TO CHECK ON BABY

IVIG=SHARK CAGE

Hopefully my shark analogy has helped some of you and not confused you more. Thanks to my ISO Moms in our Facebook group for helping me clear up some of the details in my shark analogy!

 

2,191 Days

It has been six years since Lucy’s heart stopped. I have lived 2,191 days without my daughter. 2,191 times my eyelids flickered opened and I awoke to a world without Lucy in it. And I got up out of bed and I made it through the day. Over two thousand times. In all of those days I have missed small and intimate moments with her, mundane moments that we parents often take for granted, and important milestones. All the baby snuggles, reaching for her hand in a parking lot, painting tiny toenails and washing her hair in the bath. The first words and the Halloween costumes and teaching her how to read. Birthdays and Christmases and bedtime stories. I even miss potty training and disciplining her and taking her to the pediatrician for her vaccinations. The overwhelming weight of all the things we have missed while living our lives without Lucy seems like it’s too much to bear sometimes. At the moment my grief is so fresh and raw, it seems impossible that it has been six whole years since she died. The persistence of my grief is a testament to the depth of my love for her. Oh how I ache for my little girl. But the grief should not come as a surprise. Just as it is good and right to enjoy and celebrate the children we have with us, it is good and right to miss and mourn the children that wait for us in heaven. Liam just turned ten years old yesterday and we celebrated his life. We gave him presents and made his favorite breakfast and told him we loved him. We didn’t say, “Oh, that was ten years ago. I already celebrated him back then and I’ve moved on by now.” We acknowledge the joy of his life and the gift of having him here with us. Conversely, we grieve the absence of our precious daughter, Lucy, and we acknowledge the depth of our pain and how much we miss her.

In a sermon preached only days after the 9/11 attacks in New York City, Timothy Keller said that there are two mistakes people can make in the face of tragedy, suffering and death and they are warned against in 1 Thessalonians. The first mistake is to try to avoid grief and weeping. The second mistake is to grieve as those who have no hope. He says:

 “The Bible indicates that the love and hope of God and the love and hope that comes from one another has to be rubbed into our grief, the way you have to rub salt into meat in warm climates where it will go bad. Your grief is either going to make you bleaker and weaker or it could make you far more wise and good and tender, depending on what you rub into it, what you put in. And that’s what we’re here to do. We’re here not just to weep but to rub into our weeping, hope and love.”

So today I acknowledge my profound grief for my daughter, Lucy Dair. Her name means light, and when her heart stopped, a light went out inside me that will not be lit again until I am in heaven. I feel her absence every minute of every day. We all love you so much Lucy.

img_7865

Original photo by Wright Media, edited with permission by Siobhan Fisher Photography ❤

But I do not grieve as one who has no hope. I know that, just as He promised, God will redeem every one of the 2,191 days we have missed with Lucy, and He will redeem all of the missed days to come. Today, as always, I will continue to rub hope and love deep into my wounds. Lucy left me with many gifts that I have slowly been unwrapping over these past six years since she left. The way I look forward to heaven now is a gift. My ability to appreciate life in a way I never have before is a gift. The way my heart has been softened towards others who are hurting is a gift. Even the suffering itself can be viewed as a gift because it teaches us things no one else can teach us.

Sheryl Sandberg wrote a book called Option B after her husband died unexpectedly and she was left to raise her two young children on her own. In one section of her book she writes about Joe Kasper, a man who lost his son but then found healing when he realized that his actions could be a part of his son’s legacy.

“While studying for his Master’s degree, Joe created a therapeutic process called ‘co-destiny,’ which encourages bereaved parents to view their child’s life in a larger framework so that death does not become the end of the story. Parents who seek purpose and meaning from their tragedies can go on to do good, which then becomes part of their child’s impact on the world. As Joe explained, ‘I realized that my destiny was to live my life in a way that would make my son proud. The awareness that I could add goodness to my son’s life by doing good in his name motivates me to this day.’ It’s not surprising that so many trauma survivors end up helping others overcome the adversity that they have faced themselves. ‘There is nothing more gratifying than helping someone else escape this quagmire of despair,’ Joe told us. ‘I know this passion of mine is an area of personal growth related to my trauma. Helping others grow from their trauma reflects back to my son’s life.’ After undergoing a hardship, people have new knowledge to offer those who go through similar experiences. It is a unique source of meaning because it does not just give our lives purpose- it gives our suffering purpose. People help where they’ve been hurt so that their wounds are not in vain.”

I can attest to the healing power of adding goodness to Lucy’s life by doing good in her name. This is part of the rubbing in of love and hope. Very few things in my life are as gratifying as helping other women who are dealing with a high risk pregnancy or the loss of a baby. My trauma has given me unique experiences and insights that I can share with others. I’ve been able to learn the ins and outs of this high risk pregnancy disorder and I now have the tools to help other women advocate for the right medical care during their pregnancies.

I have also been on the receiving end of this hope sharing. When Lucy was stillborn I was in the hospital for two days and two nights. While I was there I encountered many doctors and nurses who were kind but I only remember one woman who was able to comfort me with her words. A nurse told me she had suffered a miscarriage in the past and was devastated by it. She told me about her rainbow baby who had brought her so much healing. “You just have to try again, honey. You just have to get back up on that horse and try again.” Obviously, her words weren’t perfect because I couldn’t just “get back up on that horse and try again” like she had said since my next baby would also face anti-Kell antibodies like Lucy. But her act of sharing even just that tiny glimpse into her own pain, and her acknowledgement of my desperate desire for a living baby gave me hope. It encouraged me to hear about someone else losing a baby and then finding hope and trying again afterwards. Since then many, many people have reached out and shared their own stories of suffering with me and those are the people who have made a huge impact on my life. Our ISO Moms group on Facebook is full of women who have been through traumatic losses and high risk pregnancies and they use their suffering to lift other women up. We share what we have learned from our own pregnancies and we help others protect their babies. In fact, if I had not found the women in the ISO Moms group I don’t think my own children, Nora and Callum, would be alive today. I was not a part of the group when I was pregnant with Lucy so I had to figure out that pregnancy on my own. What a difference these women made in my life by sharing what they gained from their trauma.

My friend, Melanie DeSimone, lost her son, Dominic, several years ago and since then she has started a blog, The Life I Didn’t Choose, and a Facebook group for bereaved parents, Heartache and Hope: Life After Losing a Child. She has used her suffering to encourage and support other families going through similar losses. The wisdom and empathy that Melanie shares with thousands of people daily is only available to her because of Dominic, and because Melanie has chosen to rub love and hope into her grief.

For those of you who have suffered a loss or gone through a traumatic event or faced discrimination, what do you know now that you didn’t know before your crisis? How has your perspective changed? These are your gifts to share with the world, to bring purpose to your suffering and to help others who are facing a similar tragedy. And I can tell you from personal experience that when you reach out and use these gifts to help others, it will end up benefiting you more than you can imagine.

Lucy’s life and legacy live on through the families who have been changed by her story.  Here are some of the gorgeous babies from the past year or two who have been helped because of Lucy’s story. Their parents are some of the bravest people I know. I cannot describe how much joy and fulfillment these babies bring to my life and I feel honored to be a part of their stories. Happy birthday, Lucy. Some of these babies would not be here if it weren’t for you. I hope you can see what a difference your life has made in the world. I am so proud to be your Mommy.

Maggie

img_7965

Bay

 Oliver

Jake

Hayes

Cameron

Alex Ray

Francesca and Vincenza aka Frankie and Vinnie

Mila

Cole

Nolan

 Harris

Paxon, Madon and baby sibling on the way

Brianna Anne

Kolt

Eliza

Rainbow baby girl Stevens on the way

Piper

Evangeline

img_7894

Nusayba

img_7895

Uwais

Rainbow baby girl Stacey

img_7897

Baby Allen

Meadow Mae

Ezra (baby sibling on the way)

Mattea

Crosby

Anysia

Grace

Emmi

Zylas

Baby Rusch #3

img_7981

Cameela

Laney Maree

And beautiful Liliana, who, like Lucy, would probably be alive today if she had received the right care.

nilmdts-180915-mcniff-28

Liliana

20180916_225220

Liliana

Anti-Kell Antibodies: Get Those Numbers!

As with all of my anti-Kell posts, this one also applies to the other red cell antibodies during pregnancy; anti-D, anti-c, anti-E, anti-FYA, anti-Jka, and so on.

One of the best ways you can protect your baby is to find out exactly how your baby is doing, and one of the best ways to know how your baby is doing is to know exact test results (assuming your MFM is performing the right tests.) Often, doctors do not automatically give out exact test results but give their interpretation of the results instead. “Your baby is doing fine” or “Your results are in the normal range” or “Baby’s numbers have increased a bit this week but we will just keep an eye on him and scan again next week.” With most conditions this is the norm; doctors interpreting the results into understandable, bite sized sentences that patients can grasp easily. But most conditions are more common and doctors encounter patients with those conditions on a regular basis. Our disorder is far more rare and MFMs encounter it less frequently than the other pregnancy complications they deal with. Your doctor might not be up to date with the best practices regarding monitoring and treatment for your baby; and yes, even at the best hospital in your state or the best hospital in your country. This is why it is so important to get your specific test results, even if you aren’t exactly sure what to be looking for at first. Numbers are concrete. You can find out specific information with your number in hand. You can use those numbers to help the doctors protect your child. But if you just have your doctor’s opinion, you can’t help advocate for your baby or make sure you are getting the correct treatment.

Sometimes it is awkward to ask for the exact number after your doctor has concluded, “Everything looks great!” or “The numbers are a bit elevated but baby should be ok for now.” Some doctors might take it as a challenge, an irritation in their busy day or as a simple question that they are happy to answer for you. Some doctors like it when their patients want to be educated and involved in their care decisions. Regardless of how your doctor responds to your inquiries, those are YOUR numbers. They belong to you and your baby and the medical professionals are required to give you what belongs to you if you want it. Don’t feel bad for asking. Think about when your baby is finally born and they put her on the scale and you anxiously wait to see how much your bundle of love weighs. Now imagine the nurse writing the number down on your chart and not mentioning it to you. You ask for baby’s weight and they say, “Oh, it’s in the normal range,” or “It’s a bit higher than average.” Would you be ok with that? No! You want to know how much your baby weighs! We expect to receive those numbers after baby is born, but sometimes we are willing to let these other, far more important numbers go. These numbers can determine whether your baby lives or dies, so GET YOUR NUMBERS and record them in some way (notebook or phone, etc.) Envision yourself standing in front of your baby ready to fight the antibodies that threaten your child. These numbers are the weapons in your hand, ready to defend and protect. Here is a list of the most important numbers you need to record during your ISO pregnancy:

Antibody Titer: Your antibody titer gives you an idea of the amount of antibodies present in your blood. The monitoring and treatment you receive is often based on your antibody titer, and these ultrasounds and treatments are very time sensitive (my daughter might be alive if we had done the scans and treatments in time.) As soon as you find out you’ve had a positive antibody screen ask your doctor for your antibody titer and write it down, or ask for access to your medical records so you can look for it yourself.

PSV or MoM Number: This is probably the very most important number you will get during your pregnancy because it shows if and to what extent your baby is being affected by your antibodies. This number is far more important than your titer even. At every MCA scan your doctor is looking at the PSV (peak systolic velocity) number and it will show on the screen when they are doing the scan. You can look on the screen and try to find it or ask for the number. You use the PSV number and your exact gestation to determine baby’s MoM (multiples of median) which shows if baby is anemic or not. An MoM of 1.5 or over shows that baby needs an intrauterine blood transfusion. I use this website to calculate my MoM https://medicinafetalbarcelona.org/calc/  Click on Anemia then click on Cerebral Doppler, then plug in your gestational age and your MCA PSV number and it will calculate your baby’s MoM. Or you can ask your MFM for baby’s MoM instead of the PSV if you prefer. I kept a notebook with all of Lucy, Nora and Callum’s weekly PSV and MoM numbers so that we could compare them to each other and track the numbers to see if there was an upward trend starting (those often lead to IUTs.)

Beginning and Ending Hematocrit/Hemoglobin: These numbers are only important for the women who need IUTs. The beginning and ending numbers are important because they show how anemic baby is before and after the IUT. It always helped me during the IUT procedure to focus on the numbers, so the doctor would call out the hematocrit once they checked baby’s blood and I tried to remember the number instead of focusing too much on what was happening. The doctor called out the ending hematocrit once they got the blood to baby. If the doctor didn’t call out the numbers, I asked and it always made me feel better. If you prefer not to think about numbers during your IUT, just ask the MFM what the beginning and ending hematocrit/hemoglobin (some doctors prefer to use one or the other) was once you are in recovery for monitoring after the procedure. Knowing how anemic baby was before and after the IUT can help you answer all kinds of questions like- “Did my baby actually need an IUT?” “How long can my baby wait until the next IUT?” “Did my baby get enough/too much blood during the procedure?” “Was my baby anemic enough to cause future problems?”

*Side note- It is important to remember that the MoM does not always correlate with an exact hematocrit in baby, so the doctors can’t know EXACTLY when the best time to transfuse is. The MCA scan gives an idea of how anemic baby is and the 1.5 MoM cutoff is the best tool they have for knowing when to transfuse. Some babies will be more anemic with an MoM of 1.5 than other babies with the same MoM. To give you an idea of how my babies’ MoMs correlated with their hematocrits here are their beginning numbers for their first IUTs:

Lucy- MoM=2.5 Beginning hematocrit=6

Nora- MoM=1.6 Beginning hematocrit=26

Callum- MoM=1.49 Beginning hematocrit=28

Bilirubin: This number is very important after your baby is born. The type of jaundice our babies deal with is different from normal newborn jaundice. Our babies’ bilirubin usually peaks between days 4-6 so make sure they continue checking bilirubin until baby is past the peak days. Hemolytic jaundice often has to be treated more aggressively than normal newborn jaundice so you have to make sure they are tracking baby’s bilirubin closely and treating it appropriately. It is very common for our babies to be discharged too early while bilirubin is in the “safe” zone but still rising and then the babies have to be brought back and readmitted with high bilirubin levels later. High bilirubin can sometimes cause permanent brain damage, but it is completely preventable so these numbers are very important. Also be sure to ask how old baby was at the time of the blood draw since that affects treatment levels. I think Callum’s bilirubin level at birth was 5, which would not be a big deal if he was a couple days old, but right at birth that is considered a high number. So get the bilirubin number and how many hours old baby was at the time of the blood draw. This is a good tool to use to find out if your baby’s bilirubin is high enough to need treatment: https://peditools.org/bili/ 

Hematocrit/Hemoglobin: These numbers are very important after baby is born. These numbers tell you if your baby is anemic and whether baby needs a blood transfusion or not. Transfusion levels vary depending on your specific circumstance so the ISO Moms Facebook group is a great place to ask questions about whether or not your baby might need a transfusion. You can also email me if you have questions about this. Of course, we cannot make medical decisions for you but we can share our insights and experiences and you can combine that information with your doctor’s suggestions. When Callum was in the NICU after his first post birth transfusion the doctors wanted to let him drop below a hematocrit of 25 before transfusing. That isn’t super low, but I felt uneasy about waiting too long to transfuse since he was dealing with so many other preemie issues on top of the anemia. He got to 26 and was having more oxygen desats and heart decels and wasn’t feeding as well as he had been. I had a suspicion that if we handled the anemia the other issues might improve as well. I spoke to his neonatologist about this and said that I felt strongly about going ahead with the transfusion. She heard me and agreed to let them transfuse even though he hadn’t dropped below 25. Callum improved so much after his blood transfusion. No more oxygen desats or heart decels, his feeding improved rapidly and he was discharged from the NICU two days later. Make sure that your baby’s hematocrit or hemoglobin is followed after discharge from the hospital. Delayed anemia is normal for our babies since our antibodies linger in their bloodstream and continue to destroy their red blood cells for weeks after birth. One of my friends lost her beautiful daughter because none of her doctors followed up with blood work after her healthy baby was discharged from the hospital. By the time they caught the delayed onset anemia weeks later, it was too late. Dr. Moise did not allow Nora to be discharged from the hospital after birth until we had an appointment set up with a pediatric hematologist the following week, even though her numbers were perfect and she wasn’t anemic at all at birth. With both Callum and Nora we had weekly blood draws to check hematocrit and hemoglobin and both babies needed transfusions a little over a month after birth.

Ferritin: Most of you will not have to worry about this number at all, but it can be very important if your doctor wants to give baby iron supplements after birth. If your baby had IUTs or was Coombs positive after birth, do not allow the doctors to give baby an iron supplement unless they have checked baby’s ferritin levels first. The ferritin levels show how much iron the body is storing. Doctors often mistakenly equate hemolytic anemia with iron deficiency anemia and want to treat babies with extra iron. When a baby is given a blood transfusion, in utero or after birth, they are given adult donor blood which has adult level iron content. This means our babies are usually overloaded with iron so adding more iron can be dangerous. Since our babies aren’t anemic from low iron (they are anemic because the antibodies have been destroying their red blood cells) adding more iron won’t help their anemia at all. When Callum was in the NICU, after four blood transfusions (3 in utero, 1 post birth) his neonatologist wanted to give him an iron supplement. I told him I would only allow it if they checked his ferritin levels first since he didn’t have iron deficiency anemia. They agreed to check his levels and they were 1,216! The normal range for a baby his age was 25-250. We had to consult a hematologist and do some liver function tests and even discussed possibly doing a liver biopsy to check for liver damage. I’m so glad we didn’t give him MORE iron, adding to his extremely high levels. So, if you have a Coombs positive baby (who might need a blood transfusion in the near future) or have a baby who has had a transfusion, only allow the doctors to give an iron supplement if they have checked the ferritin and baby has low levels.

Remember how useful these numbers can be in your fight to protect your baby from your antibodies. If you get your numbers and then realize that you aren’t sure what to do with them, feel free to email me with any questions you have, or come join our ISO Moms Facebook group for access to about a thousand other women who have been or are going through the same thing. It is a secret group so you won’t be able to search for it, but you can search for our public page, Maternal Isoimmunization Support. Just send me (Bethany Weathersby) a private message or send the Maternal Isoimmunization Support page a private message and we will get you added to the group!

Reliving the NICU

img_0472

Last year at this time my newborn Callum was in the NICU and I was staying at the Ronald McDonald House with two year old Nora and my Mom (most of the time.) Since Callum’s first birthday I have been surprised and kind of annoyed by the waves of emotion I’ve been experiencing. The days he spent in the NICU replay vividly in my mind. That night when Josh had to drive Liam and Asher back to Tuscaloosa and I was left alone in the hospital recovering from my c-section and I hobbled down to the NICU at 2 am because I missed my baby so much. I couldn’t hold him yet, I couldn’t breastfeed him or have him in my room, but I COULD look at him, so when my thirst for him just could not wait another minute I walked all the way to the NICU without a wheelchair for the first time, alone. When I finally saw him the pride and goodness of my boy filled me up, but the nurse was visibly irritated by my presence. She side eyed me standing there next to his bassinet and I asked if he had taken anything by mouth. I had been waking up every three hours to pump and then getting up to wash all the pump parts and labeling the breast milk and sending it to the NICU, so I was proud of the breast milk that was available for him now. “Yeah, he had formula and did a pretty good job with the bottle.” “Oh, why wasn’t he given breast milk?” I asked. “I just reached in and grabbed whatever was there and it happened to be formula. He’s been crying for the past hour and I just got him to sleep. It’s not even feeding time so please don’t touch him. It’s not really time for you to be here.” she said. I was stunned into silence. Right after he was born my nurse had told me I could go down to the NICU and see my baby any time I wanted. But now, the one thing that brought me comfort, being able to physically be present with Callum and see him in the flesh, this nurse was taking it away from me? And he had been screaming for an entire hour without his Mommy. And the milk I had worked so hard to pump for him was left in the cooler. I didn’t say anything and stood there like a little kid who just got in trouble for coloring on the walls. Post pregnancy hormones coursed through me and I crumpled into tears and just sobbed, heaving and heaving. It was so embarrassing. Snot and tears trickled down my face and I stood rooted there, body aching from being on my feet for so long but I didn’t know what else to do. The nurse felt awkward and handed me a tissue. I wiped my face and hobbled out the door, down the hall, into the elevator back up to my hospital bed, crying the whole time. I know the nurse probably had a long day and was tired of taking care of somebody else’s screaming baby and wasn’t trying to hurt me, but I felt completely defeated. Now in hindsight I’m irritated with my self for not standing up to that nurse and explaining that if they had certain visiting hours for parents they should have told me, and please give him the breast milk I sent for him. Why do I even care? Callum is literally playing right in front of me right now and he is perfectly healthy and he’s with me ALL OF THE TIME. He has no recollection of that incident so why am I wasting my emotional energy on it right now?

I think having a baby in the NICU is hard for any mother but it’s even harder after you have lost a baby. It’s hard to be empty handed after giving birth, AGAIN. At the time I was in survival mode…pump, go visit Callum, drop off milk, breastfeed, go back to be with Nora, take care of Nora, eat, pump, head back to Callum, etc. (there was very little sleeping going on.) But now, in hindsight, I can make a bit more sense of how I felt. For some reason while Cal was in the NICU I felt like my parental rights were waived and the nurses were his parents, calling the shots. I had to be given permission to hold my own baby or to even be there by his side. I had to ask if I could touch him, feed him, hold him, change him. Most nurses were amazing and I was overcome with gratitude for these women who poured so much love into my baby. They even sent a card to our house after we got home with Callum congratulating us and thanking us for choosing them to care for Callum, which was so amazing. But my mind flits past that and settles on the one nurse who, after I had just met with a therapist about how to handle a preemie, broke all the “rules” I had just been taught and roughly picked up my baby, startling him into screams. She moved quickly and suddenly with him and was not gentle. He cried and I just watched because I wasn’t the parent in the NICU. But if my newborn had been in his little bassinet beside me in my hospital room recovering after the birth and a visitor handled my baby that way I would immediately take him out of her arms and not allow her to hold him anymore. The NICU was different, though, and I had to leave my son there all night with that nurse, and I felt sick leaving him there. I couldn’t sleep either because I worried about him. The next morning he was fine and I felt silly for my strong emotions and fears. But now these experiences replay in my head and I grieve again for the days I lost with Callum. I wonder if I should have been more assertive as his mother? Maybe I was too assertive? Since I felt like I wasn’t the parent, it was hard to bond with Callum like I should have in those early days and that is what grieves me the most, I think. I didn’t get to start truly bonding with him until he came home and I was his mother. People asked ME for permission to hold him and I had the choice not to leave him with anyone I felt uneasy about.

I remember how painful it was after Lucy died to hear women complain about how hard the NICU was. I equated the NICU with “live baby” and envied women who got to experience the NICU. In a way I felt like I was one of the lucky ones while Callum was in the NICU which gave me a weird sense that I was not allowed to grieve the losses I was experiencing. They were on such a smaller scale than the losses of the women who gave birth to still babies. But not grieving properly means the grief can fester and erupt later so now, one year later, I am grieving for the things I lost with Callum in his early days. Tomorrow will be one year since he was discharged from the NICU and I’m hoping this weight will lift and I can move on. I am so thankful to have him home now, healthy and thriving, and I revel in the fact that I get to be his Mommy, just me and no one else.

img_3286

Finding Joy in My High Risk Pregnancy

*TRIGGER WARNING* This blog post includes my experiences through three very high risk pregnancies and discusses stillbirth. There are some sections specifically written for the women who have been given a poor or fatal prenatal diagnosis like we were. If you have a less serious high risk diagnosis, I suggest skipping over the “Go there once” and “Prepare” sections.

“So, there’s a problem with your blood work.”

And just like that my world changed forever.

Is there anything more primal than a parent’s fear when they realize their child is in danger? There is no terror quite like it. After two healthy, normal pregnancies I was sent flailing into a terrible new world when I found out at nine weeks that my third pregnancy would be an extremely risky one. My baby’s life was in danger and there was very little I could do to protect my child. Not only that, but I was also told that all of my future pregnancies would be high risk as well. It wasn’t just this baby who was in danger, but all of my future children as well. My lifelong dream of a big family seemed to evaporate in that moment. The fear and anxiety consumed me. It was always at the forefront of my mind. Suddenly the joy and innocence of pregnancy and child birth were gone and instead I was left feeling terrified, vulnerable, and broken. I couldn’t look forward to my due date with anticipation like before. I couldn’t make plans for this baby. When I thought about the coming months, I was flooded with a fear stronger than any I had ever felt in my life.

I am now on the other side of my three high risk pregnancies. As a quick recap, I was diagnosed with anti-Kell antibodies and my body attacked my babies in utero making the pregnancies very dangerous for them. My daughter, Lucy, was stillborn a few days shy of 20 weeks in my first high risk pregnancy. In my second high risk pregnancy after a lot of intervention, my daughter, Nora, was born healthy at 37 weeks 6 days. In my third high risk pregnancy, after lots of intervention like Nora, my son, Callum, was born at 34 weeks and 4 days and spent almost three weeks in the NICU. I have learned a lot from my journey through these pregnancies and would like to share some of the things that helped me survive them. Not only did I survive them, but I learned to find joy; to seek out and appreciate the joy, no matter how minuscule it was, and make it my own in the midst of hardship and fear. I believe you too can not only survive your high risk pregnancy, but find the joy and the beauty in it as well. Since every pregnancy is different, what helped me might not be beneficial to you so feel free to discard any suggestions that don’t feel right for you personally or might not fit your situation. If I could sit with you face to face over a cup of tea or coffee and share my experience with you, this would be my advice:

You’re going to feel what you’re going to feel

There are a lot of suggestions in this blog post but when it comes down to it, most of the time, you are going to feel how you feel. Your emotions are largely out of your control when you are pregnant, and especially when you find yourself stuck in the middle of a high risk pregnancy. Anger, sadness, elation, fear, depression, gratefulness, anxiety, hope. All normal. Try not to be hard on yourself for feeling how you feel. Emotions are just emotions and they are temporary. Emotions aren’t truth, thank goodness. It’s ok to feel how you feel.

Try not to compare this pregnancy with your previous pregnancies or with others’ pregnancies.

As a mother I have struggled not to compare my children with other children and not to compare myself with other mothers. In the end it only leads to feelings of inadequacy or pride depending on who came out on top as the “better mom” or “better kid.” The same goes for our pregnancies. We cannot expect every child to be exactly the same and we can’t expect every pregnancy to be the same. One of the biggest sources of pain for me was comparing my high risk pregnancies (especially the first one with Lucy) to my previous two normal pregnancies. They were such different experiences that I felt like I couldn’t help but constantly compare them. And when I compared my high risk pregnancy to my “normal” pregnancies it always felt like the high risk pregnancy came up lacking. I also struggled not to compare my difficult pregnancy with the experiences of the women around me who were having normal, easy pregnancies that ended with healthy babies. It wasn’t fair! Why did my baby have to suffer? And why did I have to go through so much agony when they got to live on blissfully enjoying their healthy pregnancies? The jealousy and rage could consume me if I dwelt on it too long or if I saw one of my pregnant friends complaining on Facebook about how hard it was to drink the glucose drink for her diabetes test or how hard it was when her healthy growing baby danced on her bladder at night. What helped me the most was remembering that each baby is unique and so is every pregnancy. Each one of my children is so different and they each have their own quirks, faults, strengths and unique personalities. Each pregnancy also has it’s own difficulties and it’s own beauties. This high risk pregnancy was part of my baby’s unique story and I decided that I was along for the ride, no matter how difficult it might be. Lucy’s story is her life story. Nora’s story is hers, and Callum’s is his. No matter how hard some of the details are, they are theirs and since I am their mom I accept and cherish every one of their unique stories. I don’t want some other lady’s pregnancy because that’s HER baby’s story. This is MY baby’s story and I will own it and appreciate it as their unique story. Protect this perspective as much as possible. For me, this meant unfollowing certain people on social media or staying off social media when I was feeling vulnerable or frustrated. I also did not attend stressful events like baby showers or go near the baby section of stores.

Research, get a second opinion, make a treatment plan.

When people are facing a new medical diagnosis they are often told by well meaning friends and family, “Don’t google it!” in an attempt to protect the person from unnecessary anxiety. But protecting your baby is much more important than protecting your emotions. I actually found that the more I understood about what was going on inside my body and the more I understood about the risks and treatment options, the more confident I felt. Google it and research your condition as much as possible. Educate yourself so that you can be an advocate for your child. You are the parent and you should play a vital role in your child’s medical treatment decisions. If you are facing a serious medical diagnosis, get a second opinion. Then make a treatment plan or course of action plan that you feel confident about. In my first high risk pregnancy I did not feel comfortable with my treatment plan and I didn’t get a second opinion because it would have meant traveling out of state for medical care. We were told that our hospital was exceptional by those around us so we trusted the MFMs’ treatment plan even though we felt uneasy about it. Our daughter died as a result. With my two subsequent pregnancies I spent hours researching, asking questions and educating myself about anti-Kell antibodies and the treatment options. We traveled out of state for the best medical care possible and I had a treatment plan that I felt very confident about. I knew that if we lost our baby, I would have done everything possible to save her and that brought me some level of peace. Both babies survived because they received the correct medical treatment.

Baby’s life over everything

This one is specifically for the women with very high risk pregnancies who don’t know if their baby will survive. I know that I don’t have to remind other moms of the importance of their baby’s life. It is the reason you are reading this blog post, it is at the heart of all you do. But I do just want to remind you not to let things that are temporary or less important prevent you from doing everything possible to save your baby. If I had a list of the things in my life from most important to least important, which of these things would be at the top? Job, finances, keeping regular weekly schedule, personal comfort, MFM’s feelings, older siblings comfort and regular schedule, the opinions of others, your baby’s life. Your baby’s life is at the top of the list. Do not let something that is lower on the list get in the way of doing everything possible to save your baby’s life. Even if you lose your baby in the end, it will be very important to know you did everything you could have to save your child. With my second high risk pregnancy I decided that I could not stay with the MFMs at UAB in Alabama who made mistakes with my previous baby so I drove 11 hours to Houston, Texas to be treated by Dr. Ken Moise. I felt a little irrational when I decided to go that far with my four year old in tow (on his birthday nonetheless!) It was inconvenient, we didn’t have the money (we are still trying to get out of debt three years later.) It was really hard to leave my oldest son, who was in kindergarten at the time and to leave my husband, and it was sad to have to quit my part time job, but when I walked into The Fetal Center for my first appointment I felt a great weight lifted off my chest and I knew my baby was in the best hands possible. It immediately alleviated a lot of the stress I had been carrying around and I felt peace knowing that I was doing everything in my power to save my baby Nora.

Grieving is normal, regardless of outcome.

Many things are lost in a high risk pregnancy and it is normal and appropriate to grieve for these things. Dead dreams, lost innocence, guilt, fear, painful interventions, inability to enjoy the pregnancy and difficulty accepting what is happening are just some of the things a pregnant woman might face during a high risk pregnancy. During all three of my high risk pregnancies I struggled at some point with heavy depression and anxiety. It wasn’t until my third one that I was able to accept the depression as part of the grieving process and I learned not to over analyze it. I knew that it would be temporary, just like the morning sickness, the back pain and the weekly MFM appointments. Let yourself grieve and mourn because you are going through a very real loss, even if you do end up with a healthy baby. The one thing you should not grieve is the loss of your baby because your baby is alive inside you right now. The time to mourn for your lost child is after you have lost your child, if that ever happens. Try not to mourn what isn’t lost yet.

Take lots of pictures

When I was pregnant with Lucy I was so terrified and often felt hopeless, so I purposefully did not take pictures of my growing baby bump. I thought it would protect me from more grief in the end if we lost her. I was wrong. After she died I desperately wished I had more pictures of my Lucy belly, since those were some of the only pictures I had of her while her heart was still beating. When I was pregnant with Nora I made sure to take lots of pictures and I posted them often on social media because I wanted to celebrate every week I got with her. I wanted to document her life and find joy in my growing belly and taking pictures was an exercise in hope for me. I knew that I would cherish the pictures whether she survived or not.

Go there, ONCE

The fear of losing my baby consumed me when I found out my baby could be in danger. There was a constant feeling of dread that weighed me down, like a heavy blanket. Over and over again I wondered what the future would look like. Would my baby survive? Would I survive if I lost my baby? What would I tell my older kids? Subconsciously I would fast forward and live out the worst case scenario in my head, over and over again. This is not healthy and it is not helpful to anyone, including your baby. I decided to go there in my mind, ONCE, and try to make any preparations needed just in case my worst fears came true. Then, I did not go there again. If I felt my mind slipping and I started imagining the worst, I would purposefully stop my thoughts and remind myself that I had already thought through that scenario and prepared for it as much as possible. There was no need to go there again. As a side note, I wasn’t always able to control my thoughts but I tried my best.

Prepare

As I just mentioned, it helped me to feel as prepared as possible for the worst, just in case it happened. I learned with Lucy, that no amount of bracing myself emotionally or trying not to get attached or not allowing myself to hope, could prepare me for the loss of my child. None of it helped ease my grief in the end. But there are some practical things that I wish I had done ahead of time that would have helped a little bit. When I was pregnant with my baby Nora the doctors gave her a 0% chance of surviving the pregnancy, so I felt that a stillbirth was imminent. I had her diaper bag already, since we had bought it for our baby Scarlet, but never used it in the end because the adoption fell through. I removed all of the cute things we had for Scarlet from the bag and packed the bag with tiny preemie hats, little bows and headbands, a couple of cute preemie outfits and a beautiful, soft pink blanket that I bought just for Nora. All of these things could have been used if Nora had been stillborn. The hats, bows, tiny outfits and blanket would have been used for pictures and then saved as precious momentos of our daughter. I purposefully did not pack pacifiers, diaper cream or other things needed for a living baby because I did not want to face those emotional triggers if we lost our daughter. We also picked a name out as soon as possible since we truly had no idea when we would need to name our daughter; 16 weeks? 20 weeks? 30 weeks? Having name ideas ready helped me have one less thing to worry about. We also were very honest with our two sons about everything throughout the pregnancy, which is a personal decision that might not be right for your family. For us, we knew it was best to tell the boys (3 and 5 at the time) at the very beginning of my pregnancy with Nora that Mommy was pregnant but we did not know if the baby would come live with us in our house, or go live in heaven with Lucy. We didn’t have the option of not telling them about the pregnancy because I had a permacath placed and two very obvious tubes coming out of my chest and we would be relocating for the pregnancy so it was impossible to hide. We told them that the baby would get sick in Mommy’s tummy and need medical help and we could pray that she would survive. But God was in control and we could always, always trust Him. They understood and handled everything better than expected, as children often do. Once I had the diaper bag packed, the name picked out and the boys informed, I felt as prepared as possible for the worst. Then I made an effort not to allow myself to go there again in my mind. I could remind myself that everything was ready in case we lost her and I put the idea of my baby dying far up on the shelf in the back of my mind, in a box, padlocked and shut away. I knew it was there, but I chose, day after day not to focus on it.

HOPE.

This one turned out to be one of the hardest for me, especially after losing Lucy during my first high risk pregnancy. We were given no hope with our baby Nora once we discovered that she had Kell positive blood and would be attacked in utero by my antibodies. The doctors said she would not survive. But I think hope is crucial to surviving and finding joy during a high risk pregnancy, no matter the odds. I learned with Lucy that whether you have false hope or you “prepare” yourself emotionally for the loss of your baby, if you do end up losing your baby the grief is still the same. Deciding not to have hope during your high risk pregnancy will not shield you from the pain of losing your child if your baby doesn’t make it. But hope during your pregnancy is life giving and I like to think that your baby feels that hope running through your veins into her little body. Yes we are afraid and we worry about our babies and we stress about the details of the disorder or we dread the possibilities, and maybe it isn’t possible to feel hopeful at the moment, but we can at least leave room in our hearts for hope. Even if it’s just a tiny space, leave some room for hope. One ounce of hope is more powerful than 10 tons of fear. You never know what miracles might happen. These are what my babies look like today, the ones who were given no hope of surviving, the ones we were told to terminate:

img_3299-1

Focus on the next milestone

I quickly learned that if I looked ahead to my due date or afterwards, it only stressed me out because it felt like I was pulling down that padlocked box I had put up high on a shelf in the back of my mind. Instead, I focused on the next milestone and prayed about making it that far. Seeing a heartbeat on the early ultrasound, getting through the surgical placement of my port and permacath, making it to the second trimester, first MCA scan, getting far enough along for baby to have an IUT if necessary, the next MCA scan, the first IUT, making it to viability with a heartbeat (the biggest milestone for me!) 28 weeks, etc. Sometimes the goal was just to make it through the day. This helped me feel a little bit more in control to have small goals that felt attainable.

Get a home doppler.

This is another personal decision that might not be right for you, but it helped me a lot so I am including it. When I first got my home doppler I knew I had to set up some rules for myself before trying to use it because I knew it could end up creating unnecessary anxiety. I decided to only use it once a day at the most and to only try 15 minutes at a time to find baby’s heartbeat. I know I am not a medical professional and have not been trained to use the doppler so it was ok if I didn’t find baby’s heartbeat right away (especially early in the pregnancy.) I gave myself 15 minutes to find the heartbeat and if I didn’t find it within that time I would put my doppler away and do something else. Once I was out of the first trimester I was always able to find the heartbeat within ten minutes. I watched Youtube videos showing how to find baby’s heartbeat with a home doppler and that helped me figure out how to do it. Another rule I had was kick counts over doppler. If baby wasn’t meeting the kick count, but I could still find baby’s heartbeat, I still went in to have baby checked out. Just because I could hear baby’s heartbeat it didn’t mean baby wasn’t in danger. It just meant baby was alive. But the home doppler was a godsend in those irrational moments when I would suddenly feel panic wash over me and I would think, “My baby is dead I know it!” Just hearing the sound of my baby’s heartbeat would calm me down and I would sit listening to the thump, thump, thump until my own heart stopped racing. This was especially needed after having a procedure like the amniocentesis, surgical placement of my port or IUTs when I was very worried about baby’s well being. The purpose of the home doppler is to bring you peace and not to create more anxiety. It is also not meant to be used by you to diagnose your baby. If you start sensing that the doppler seems to be causing more stress than reassurance, sell it or give it away.

Ask your doctor about antidepressants or anti-anxiety medication

Again, this might not be for everyone, but if you are struggling with anxiety or depression during your pregnancy, talk to your doctor about your options regarding medication. I started taking Wellbutrin after Lucy died and my doctor and I agreed that it would be best for me to continue taking it during my pregnancy with Nora since it was such a high stress situation and I struggled with PTSD. The Wellbutrin is considered safe during pregnancy and breast feeding and is non-habit forming so I could stop it at any time in the future if I felt like I wanted to. The Wellbutrin helped keep my anxiety from growing to a point where it was out of my control. It also helped prevent postpartum depression after Nora was born. I took it throughout my year of breastfeeding Nora, through my pregnancy with Callum and during my year of breastfeeding Callum as well.

Find encouraging verses, pray them over your baby.

This is another personal one that might not feel normal for those who are not people of faith. But God is still God and He loves your baby deeply and He is always available to you, whether you pray on a regular basis or you never have in your life. It might flow easily for some and it might feel really awkward and forced for others. I encourage you to give it a try. Prayer is the single thing that helped me survive my high risk pregnancy the most and enabled me to find the joy along the way. There is something so purely peaceful and reassuring about entrusting your child back to God and saying, “Protect my baby. I trust you.” He is the one who has ultimate control over the situation. I found several Bible verses that encouraged me and I read them and prayed them over and over again. They were written in my medical journal that I took with me to every appointment so that when I was in the hospital or the MFM’s office and I opened my journal I would see the verses. I tried to read them at night before going to bed since the middle of the night is often when our fears loom larger than they are in the daylight. I found that just like Peter in the Bible, when he was walking on the water towards Jesus in the midst of a raging storm, if I looked at the giant waves threatening me, I would start to sink. But if I looked to Jesus and focused on His face and His promises, I was saved. Reassured. Lifted up out of the swirling waters that threatened to drown me. These are some of the verses that helped me the most during my high risk pregnancies (I’ve also included a prayer with each verse that you can pray if you aren’t sure what to say):

Zephanaiah 3:17 The Lord your God is in your midst, a mighty one who will save; He will rejoice over you with gladness; He will quiet you by His love; He will exult over you with loud singing.

Prayer: Lord, I know that you are in my midst; you are right here with me at this very moment. Quiet my anxious heart by your love. Fill me with your peace. You are the mighty one who will save. I pray that you save my baby. Strengthen my baby for this journey and let my baby feel your love and peace right now.

 

Isaiah 41:10 Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you. I will uphold you with my righteous right hand.

Prayer: God, you tell me not to fear but I am afraid and I’m worried about the future. Take my fear away and replace it with trust in you. Come and help me, strengthen me and uphold me with your hand. I need your reassurance. Thank you for loving me so much. Thank you for holding me up when I cannot stand on my own.

 

Isaiah 26:3 You keep him in perfect peace whose mind is stayed on you, because he trusts in you.

Prayer: When the waves are so big I feel I will drown, help me keep my eyes on you, draw me out of that mind space of fear and dread. As I look to you for comfort, overwhelm me with your perfect peace and help me focus my mind on you. Thank you for being bigger than any problem I have to face today.

 

Romans 15:13 May the God of hope fill you with all joy and peace as you trust in Him so that you may overflow with hope by the power of the Holy Spirit.

Prayer: Lord, you say you are the God of hope and I choose now to trust in you. I am trusting you with the things I cannot control. Nothing is out of your control and I feel the peace of handing it all over to you. Fill me with your hope and peace, OVERFLOW my heart with peace. Not only peace and hope, but also joy. Please help me to find joy today, no matter how impossible it feels at this moment.

 

Psalm 32:7-9 You are a hiding place for me; you preserve me from trouble; you surround me with shouts of deliverance. Selah. I will instruct you and teach you in the way you should go; I will counsel you with my eye upon you.

Prayer: God, I am scared about what will happen to my baby. I’m so anxious and worried about the future. You are my hiding place. When the storm of fear, worry and sadness swirls all around me I know I can find safety in you. Surround me and my baby with protection and safety. Preserve us from trouble. Give me wisdom along this journey. Help me make the right decisions regarding my baby’s medical care. Give my doctors wisdom and help them make the best decisions for me and my baby. You say you will counsel me with your eye upon me. Thank you for loving me so much that you keep close watch over me and my baby.

 

Psalm 18:31, 32 For who is God, but the Lord? And who is a rock, except our God? -the God who equipped me with strength and made my way blameless.

Prayer: Oh God, be my rock and my stability. My whole world feels shaky and terrifying right now as I wait and hope for my baby’s safety. You are my strong foundation and because of you, I will not be shaken. Thank you for being so strong and for being my anchor. Equip me with strength to get through today and tomorrow and the rest of this pregnancy. Equip my baby with strength right now, Lord, and wrap my baby in your protection.

Find the Joy

Even in the most terrible situations, even on the hardest days, there are small gifts of joy. Difficulty and sadness do not cancel out goodness and joy. If I have learned anything over the past few years it is that they can exist together. I realized during my high risk pregnancies that if I looked closely enough, nestled there amongst the fear, the pain, the uncertainty and disappointment, there was joy. Sometimes just a tiny drop, but still joy. One of the strongest emotions I dealt with during my pregnancies was dread. I had to endure painful procedures and awful side effects. I found myself dreading the procedures for weeks before they actually took place. I dreaded the surgical placement and removal of my port and permacath. I dreaded my plasmapheresis treatments and especially my weekly IVIG treatments that left me with debilitating migraines, vomiting, terrible muscle pain and weakness. Of all the procedures I experienced, the one I dreaded the most was the intrauterine blood transfusions the doctors had to routinely perform in order to keep my baby alive. One day before one of my IUTs with baby Nora I was so tired of the overwhelming dread that I prayed audaciously for God to not only help me endure the IUT but to actually help me find some enjoyment in it. The next day I purposefully searched for the gifts that I could enjoy, even though I was terrified for my baby and not looking forward to a needle being pushed through my body. “Ok, what can I appreciate about this?” I thought as I put on the thin hospital gown and waited for the nurse to come insert my IV. Well, there weren’t any little kids around who needed something from me. I could be alone (something I often coveted while at home on those overwhelmingly busy days) and I could nap if I wanted. As the day progressed I glimpsed little gifts from God, gifts that were always there but I hadn’t noticed them before. When the nurses lifted me and placed me on the operating table in the freezing operating room, I savored the heavy, warm blankets they draped over me. The warm air that blew under the blankets at the foot of the operating table felt amazing. When Nora’s ending hematocrit was called out to me after they got the blood to her I thanked God for the miracle of the IUT, that these doctors could fill my baby up with fresh, healthy blood even while she remained in utero. The sedation they gave me through my IV calmed my nerves and I appreciated it as I drifted off to take a much needed nap in the recovery room after the procedure was done. I awoke to the sound of my baby’s strong heartbeat thump thumping on the monitor and I thanked God for the best gift- a baby with a beating heart still inside me. Ever since that day when I dread something that I have to endure I pray and ask God to help me find some enjoyment in the experience and He always does. I also realized the one of the best ways to guarantee joy is to be thankful.

During my last pregnancy with my baby Callum I had to travel to Atlanta for my weekly (sometimes twice weekly) appointments which ended up being about 8 hours of driving in a day. It was exhausting and difficult to find childcare for my three kids during these appointments, not to mention all of the other medical procedures. Near the beginning of the pregnancy I wilted as I thought about making the trip week after week throughout my entire pregnancy. How could I do it? I often had to wake up at 3 or 4 am to get to my appointment on time (Atlanta was in a different time zone which didn’t help.) But I prayed and asked God to help me enjoy it somehow and I thanked Him for the hours I got to spend in my car. I decided to use the hours for things I couldn’t do when I was home with my one year old Nora and her big brothers. I prayed without interruption. I listened to podcasts and books on cd and 90s gangsta rap once I got close enough to Atlanta. I packed delicious food for the drive and enjoyed eating in peace (poor Dr. Trevett always wondered why Callum was so active during the ultrasounds and I’m pretty sure it had something to do with the four hours of eating I did leading up to the ultrasound.) I memorized verses and called and talked to friends. I started looking forward to my long drives and I realized that they refreshed me in a way. Once, I almost had to pull over on the side of the interstate because I was laughing so hard listening to David Sedaris’ Me Talk Pretty One Day (strongly recommend!) Tears of laughter streamed down my face, blurring my view of the road, and I realized that my heart was full of joy- right there in a dark and scary place in my life. Belly laughs right there amidst the back pain, headache and nausea while I drove to the ultrasound that would show whether my son was thriving or not. One of my favorite verses is Psalm 4:7 “You have put more joy in my heart than they have when their grain and wine abound.” My personal paraphrase of this verse for my high risk pregnancy was, “You have put more joy in my heart than they have when their pregnancies progress without any problems.” My true source of joy is God, not my circumstances, and nothing can take Him away from me. He can give me more joy in the middle of my high risk pregnancy than those who have easy circumstances. Ask God to give you joy right where you are. Look for the small pockets of joy and you will find them.

Distract Yourself

Once you have done all of the hard work of researching and making a solid treatment plan, working through your emotions and preparing for the future, the best thing you can do is distract yourself. You’ve done everything in your power to keep your baby safe and now you just have to wait without going crazy. Find ways to keep your mind busy and be kind to yourself…family outings, books, Netflix, podcasts, music, shopping,  whatever it takes to help pass time. I listened to a daily podcast called Brant and Sherri podcast which was really silly but uplifting and it always helped me when I was feeling very anxious. I also listened to Podcasts during my IVIG treatments and encouraging songs helped too. I tried not to leave any empty space of quiet and inactivity because it was then that my mind would start spiraling.

You are equipped.

I firmly believe that if you are pregnant, you are already a parent. You don’t become a parent the day your child is born. You become a parent when you discover that your child is growing inside you and that is when you start making important decisions for your child. You make medical decisions regarding your prenatal care which affects your baby. You make decisions about what you will and won’t eat in order to keep your baby safe. You make decisions about genetic testing, birth plan, which pediatrician to use, etc. Not only are you a parent already, but I believe that God designed your specific baby for you and He has equipped you to be that child’s parent. He will give you the wisdom, the strength and the love you need to get through this pregnancy because that is what you need to do as this baby’s parent.  Every parent is going to struggle in different ways along their parenting journey with each of their children, whether it’s during pregnancy, during the toddler years, teenage years or when their children are adults. Each one of my children needs certain things from me as their mother and many times it requires a dying to self on my part. Awkward confrontations with fellow parents, losing sleep during infant years, hours spent in the pediatrician’s office or staying up late waiting for your teenager to come home. Liam, Asher, Lucy, Nora and Callum have all needed me to parent them in certain ways. Actually, writing this blog post is one of the things I feel I need to do to “parent” Lucy the best way I know how. All of the stress, the agony and the pain of your high risk pregnancy? This is what this child needs from you as their mother. This is your sacrifice for your baby and you are equipped to do these things for your child.

 

I applaud you if you’ve made it all the way through this long blog post! To wrap things up, I want you to know that YOU CAN DO THIS. I have experienced outcomes on the worst and the best ends of the spectrum when it comes to high risk pregnancies. One pregnancy ended with the death of my child and two of my high risk pregnancies ended with healthy babies. Throughout these experiences God was faithful and He gave me what I needed at the time to get through it. I was not consumed and you will not be either. You are going to get through this.

Lamentations 3:22, 23 Because of the Lord’s great love we are not consumed, for His compassions never fail. They are new every morning; great is your faithfulness.

Every morning when you wake up God has new mercies waiting for you. That includes today, right now. And the best thing is that He has gone ahead of you in this day and in this pregnancy. He is there in the future waiting for you, ready to take care of you. None of this is out of His control. He will never leave you or your baby.

Deuteronomy 31:8 The Lord Himself goes before you and will be with you; He will never leave you nor forsake you. Do not be afraid; do not be discouraged.