16 Week Update and Gender Reveal

We had another great scan yesterday at 16 weeks and 1 day, but first, the gender reveal! The video is too long to upload here on my blog so if you want to watch it you can see it on my Facebook page (Bethany Weathersby.) For anyone who just wants to know now without watching the video, we are having our fourth BOY. We were shocked when we heard we were having another boy but now we are feeling really excited about him. Of course, my heart aches for Nora, who will never have a sister here on earth. The news of another brother did break open my Lucy wound again (which happens often) so that has been hard. But we are also very thankful to be given another baby to love and parent. Sometimes I feel like the luckiest person in the world. My mom (who has five kids as well) often says she feels like the richest person in the world when she thinks about her kids and grandkids, and that’s how I’ve been feeling lately- the luckiest, richest person in the world to be given five children.

Yesterday baby’s PSV was consistently 22, which is lower than last week! Using the PSV and the gestational age, that can be calculated to a 1.04 MoM, which is normal and does not indicate anemia. Baby’s heart function looked great, he was super active and of course, there were no signs of fetal hydrops or fluid build up anywhere. Dr. Trevett checked the cord and placenta placement again and it is in the perfect spot for an IUT when it is time to do one. It was kind of hard to get a good picture of baby boy since he was so active and kept kicking and flipping all over the place. Here are a couple of pictures from the ultrasound yesterday.

Dr. Trevett also checked my antibody titer again yesterday. Usually once the titer is critical (4 for Kell and 16 for the other antibodies) there isn’t much need to continue checking the titer since the baby is being checked every week with MCA scans (or SHOULD be checked every week with MCA scans.) Remember, the titer just tells you “how many sharks are in the water with your baby” and the MCA scan tells you “whether your baby is being attacked by the sharks and to what extent.” In my case my antibodies are more aggressive than most, and my titer was VERY high at the beginning of the pregnancy. This is why I have been doing plasmapheresis and IVIG to protect the baby until he is far enough along to receive intrauterine blood transfusions. My titer at the beginning of the pregnancy was 2,048 and after three rounds of plasmapheresis my titer was 128. Three weeks later they checked my titer again and it was 256. The reason they are keeping an eye on my titer is because if it reaches 1,024 or above we will do more plasmapheresis treatments to try to bring it down. Yesterday my titer was back down to 128, which is amazing news! I don’t know why it went down but as Dr. Moise said, no need to argue with success. I was expecting it to be much higher but for some reason it isn’t bouncing back up to the thousands.

Dr. Trevett and I also discussed Coronavirus scenarios (at my request, of course) and he said that if I get the Coronavirus, he will continue to treat me as usual, just completely covered in protective gear from head to toe. If he gets the Coronavirus he has to be isolated and won’t be able to treat me. In that case, I will drive to Houston and be treated by Dr. Moise. Hopefully we will be able to avoid the virus but it still makes me feel more confident just having a tentative plan in place.

Since my appointment yesterday I have finally allowed myself to hope that we might actually be able to bring this baby home alive one day. I’m only 16 weeks, so we still have a long way to go, but each week that passes without intervention is such a gift. Each week brings baby’s survival rate up a little more. Again, I feel like the luckiest, richest person in the world to be given this chance to have five children, a lifelong dream of mine. I thought my dream of a big family was destroyed along with Lucy in 2013, but somehow here I am pregnant again with a healthy baby boy. My next scan is on Monday at 17 weeks and 1 day. I will update the blog afterwards! Thanks so much for encouraging us and praying for our baby boy.

Baby Weathersby

We have some big news to share with everybody (although most of you probably already know!) I’m pregnant and due in September on Callum’s third birthday. We are so excited about this baby and we love him/her so much already.

Our journey to this baby has been different from any of our previous babies. With the first four babies it was a given that we would try for another baby in the future. Even when I was pregnant with Nora I thought that if she survived we would be open to another baby once she was a year or two old. But after Callum was born we really felt like we were done and we had pushed our luck far enough. Even though we had previously wanted five kids, we were tired of being in survival mode and we felt like we could be complete with our four living children. After Callum was born Josh and I prayed that God would give us peace about being finished growing our family and that He would give us confidence as we moved into this new phase of life- out of the family growing phase into the next phase, whatever that looked like. But as we prayed that prayer over and over again God started to do the opposite. He didn’t give us peace about being done. In fact one night I dreamed about my child (whose name meant “bringer of good news”) and I could not get this kid out of my head. I brushed it off for a while and finally told Josh about the dream. He said, “We absolutely are not having any more babies.” I agreed with him. But slowly and steadily God continued to bring this baby to mind, this one last baby, and I felt like He was asking me to step out in faith. So I told God that if He wanted us to try again, then He would have to convince Josh. We found out that the M281 trial was open and accepting patients around that time. It looked like I might qualify for the trial so the possibility of having an intervention free pregnancy and a healthy baby seemed quite intoxicating.

To make a long story short, Josh and I discussed this baby for years and we discussed the idea with our doctors in all three states (Georgia, Alabama, Texas.) Josh decided he was ready to try for our last baby, but it was still scary to take the leap. We know that just because God calls us to do something, it doesn’t mean it will be easy, it will work out the way we want it to or that it won’t involve suffering. But we also know that the greatest miracles and some of the sweetest gifts God has ever given us started with a step of faith. We know from experience that our life story will be so much better if we let God write it. His plans for us are so far beyond what we could ever imagine for ourselves.

Ephesians 3:20 Now to Him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, to Him be the glory 

When making these pivotal life decisions it always helps me to go back to the question, “What is my goal/purpose in life?” Is it to be comfortable, financially stable and safe? Is my goal to please others around me? If it was I certainly wouldn’t be pregnant with this baby right now. No, those are not our main goals and those things will not bring us fulfillment. My goal is to know God, enjoy Him, obey Him and bring Him glory with my life; to invest in others and love them well. I don’t always accomplish these goals obviously (I am selfish and sinful at the core) but I WANT to. And when I pursue these things I find true fulfillment. I’m reminded yet again how thankful I am to have a husband who shares the same goals.

So far, this journey God has brought us on has been one of stress, suffering, growth and joy. We started trying for a baby last year and we had a very early miscarriage in July, then a 7 week miscarriage in November. At the same time I was trying to start The Allo Hope Foundation which was another leap of faith that God called me to years before. I will save that story for a different blog post. But this past year has been really hard for our family, even though we are doing what we feel God is calling us to. On New Year’s Day I found out I was pregnant again and I had very little hope that the pregnancy would progress past the first trimester. This fear had nothing to do with my anti-Kell antibodies since they can’t hurt the baby in the first trimester. I was worried because I’ve had four early miscarriages in the past and I turned 39 in January, so my odds of having a first trimester miscarriage were high. I tried not to even think about the baby (basically impossible) but week after week and ultrasound after ultrasound, we have been pleasantly surprised by a healthy thriving baby. So far I’ve had 7 ultrasounds and every time I see my baby my heart opens a little more and my love for this tiny person grows.

I am now a day shy of 14 weeks pregnant. Unfortunatley, the M281 trial was not the right treatment path for us for a couple of reasons. We discovered at the beginning of the pregnancy that my Kell titer was higher than it has ever been, 2,048. With Lucy it was 1,024. So this made us very nervous and we felt uneasy about starting treatment as late as 14 weeks. The M281 trial starts the drug infusions at 14 weeks if the baby is Kell positive. I also found out later that my measles immunity test was 1 point below immune, so that disqualified me from participating in the trial. I had checked my measles immunity before attempting pregnancy and I was definitely over the threshold and was considered immune. For some unknown reason that number dropped between then and when I became pregnant with this baby. Thankfully we went into this pregnancy knowing that if the trial wasn’t the right treatment path for us we could use the same treatment plan that we used with Nora and Callum. I started plasmapheresis and IVIG at 11 weeks. After the three rounds of plasmapheresis my titer had dropped from 2,048 to 128. That is a HUGE drop! We were all very impressed with how well those treatments worked. We will test my titer again on Monday to see how high it is now. I fully expect it to be back in the thousands again, but maybe I will be pleasantly surprised. After a double loading dose of IVIG right after my three rounds of plasmapheresis were done, I am now receiving IVIG every week to try to protect the baby from my antibodies.

We still don’t know if our baby is Kell positive or Kell negative. Each baby has a 50% chance of being Kell positive/negative because Josh is heterozygous for the Kell antigen. However, we know that our last 4 babies, possibly all 5 have been Kell positive. Asher, Lucy, Nora and Callum are all Kell positive and we have never had Liam tested so we aren’t sure about him. On Monday, Josh and I will have our blood drawn in Atlanta and Dr. Trevett will have it sent to The Netherlands to have the cell free dna test done. Then we should hear within a week or two whether the baby is Kell positive or Kell negative. We did the regular NIPT blood test a couple of weeks ago to find out gender and have genetic testing and we got those results back. Thankfully the baby tested negative for the major genetic disorders (trisomies) and we will share baby’s gender with everyone once we know baby’s antigen results.

On Monday I will have my first MCA scan done by Dr. Trevett in Atlanta. Baby will be 14 weeks and 1 day and we are praying that (s)he won’t already be anemic. Please pray with us for a healthy baby and no signs of anemia. These weeks (13, 14, 15) are the most dangerous for the baby since the antibodies could possibly affect him/her and there is very little that can be done for an anemic baby at 13-15 weeks. Intrauterine blood transfusions (intraperitoneal) are possible at 15 weeks but they are very dangerous and the survival rate isn’t great. I will update everyone as soon as we have our ultrasound on Monday. We are thankful to have you along for the ride!

 

Lucy’s Stocking

Lucy's stocking

I was supposed to write this post several days ago to share The Allo Hope Foundation’s very first fundraiser ever, “Lucy’s Stocking.” Of course I put it off until the last minute. Today is Giving Tuesday and Facebook will match any donation sent to the Allo Hope Foundation on Facebook. But instead of focusing on asking for your donations, I just need to write about the incredible support I have been shown today.

I have actually been in tears on and off all day for two very different reasons. The first reason is that so many friends, family members, antibody moms and even strangers have shared our fundraiser and contributed to “Lucy’s Stocking.” It encourages me to tears because so much of this journey over the past few years has felt so isolating. Going through my pregnancy with Lucy and trying to learn how to advocate for her on my own was extremely difficult and isolating. The hard work of grieving a lost child is also something only I can do myself. Neither Josh nor my friends/family can do it for me. The loneliness of missing her in all the quiet moments that nobody else notices is overwhelming sometimes. It feels like nobody else sees the empty places where she should be.

Maternal alloimmunization is a disorder that is often overlooked and rarely noticed by the medical community, as many of you already know. There is a relative lack of funding and research compared to more well-known medical conditions. Even our babies who are attacked by our antibodies and struggling with HDFN are literally out of sight while battling for their lives in utero. And it feels like our babies aren’t always “seen” by our doctors either, especially when we have to convince them to provide the right medical treatment for our children.

Trying to help other families struggling with alloimmunization and HDFN can also feel isolating. Of course there are many other women who are helping too, but it’s devastating when I try my best to help another woman keep her baby safe and her baby dies. I grieve for her baby mostly behind the scenes as I go about my day, cooking dinner, wiping messy faces, preparing an English lesson but still mourning for this little life that has been cut short. So, in many ways this journey has felt like an isolating one, and sometimes the process of starting this nonprofit organization has felt like an uphill battle. Time and time again I have thought, “I am not equipped for this, I have too many faults, I am inadequate.”

But today I have seen the flood of support from so many people through our first fundraiser and it feels like I’m not actually isolated at all. I’m supported, I’m encouraged and I’m not alone in this fight for better medical care. Maybe our babies really are seen and the value of their lives is not missed. Thank you to everyone who has shown up for us and reminded us that we are not alone. We are not isolated or overlooked.

The other reason I have been crying on and off today is because I got yet another message this morning from someone I care deeply about that said, “There was no heartbeat on the ultrasound today.” Devastated. Flooded with grief for this family. Still in disbelief. Motivated to keep working and growing The Allo Hope Foundation so this doesn’t happen again.

If you would like to read about Lucy’s Stocking, you can find our fundraiser on Facebook at: https://www.facebook.com/AlloHopeFoundation/posts/123222952468227 or if you aren’t on Facebook you can read about our fundraiser on Mighty Cause here: https://givingtuesday.mightycause.com/story/Allohope

Or if you want to donate directly you can do that here:

https://givingtuesday.mightycause.com/forms/Allohope?embed=donation_widget

 

The Allo Hope Foundation

I hope everyone has had a wonderful Thanksgiving week so far. It has been way too long since I’ve updated the blog!  Nora celebrated her fourth birthday in July and Callum celebrated his second birthday in September. They are growing and thriving and lighting up the world around them. We still can’t believe they are both here safe and sound after we were told we could never have any more children after Lucy died.

I wish so desperately that every woman with these antibodies could have the phenomenal care I received during my pregnancies with Nora and Callum. Unfortunately, it is fare more common to see women receive inadequate care during their alloimmunized pregnancies than the proactive care I had with my last two pregnancies. Nora and Callum are my constant reminders of how these pregnancies can and should turn out if treated properly. For years I have wanted to do something more to fight this disease and prevent other parents from experiencing the trauma and devastation that we have endured. With the encouragement of family, friends, doctors and fellow antibody parents, I decided about a year ago that I would take the leap and try to start a non-profit organization to help support families facing alloimmunization (antibodies during pregnancy) and to help protect babies threatened by HDFN (hemolytic disease of the fetus and newborn.) I have teamed up with some wonderful people and we are so excited to announce that The Allo Hope Foundation is now an official 501(c)(3) non-profit organization.

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Our main goal is to prevent harm, stillbirth and infant death caused by maternal alloimmunization and HDFN. We are dedicated to providing patient advocacy, support and education while promoting research and improving healthcare practices for the condition.

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We are in the start up/launch phase at the moment, raising funds and forming our patient advisory board and medical advisory board. Our first priority is to raise funds and create a website where patients, their families and care providers can find information, resources and support. The Allo Hope website will also allow us to reach our global alloimmunization and HDFN community and bring more awareness to the disease. Come and follow us on Facebook and Instagram and stay tuned for ways that you can help! Thank you to everyone who has prayed for me and encouraged me on this journey for the past seven years, I don’t know where I would be without you.

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.

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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!

 

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:

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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:

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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.

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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.

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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!