First MCA Scan

I am now 14 weeks pregnant and on Monday we had a very important scan. We are happy to report that we got all good news. I had gone three whole weeks without an ultrasound leading up to Monday’s appointment so I was nervous baby might not be doing well. My mind kept replaying my ultrasound with Lucy when we found out she was severely anemic and my fear grew more and more intense as the ultrasound got closer. Thankfully the baby looked great and had a good strong heartbeat. (S)he was very active and all of the organs looked good from what they could see. There were no signs of distress, anemia or hydrops.

Dr. Trevett and I had originally decided to do the first MCA scan when I was 15 weeks but I started to wish we had scheduled it for 14 weeks since anemia can start this early in severe cases. The MCA scan is the only way to detect fetal anemia before it gets severe so even if baby looked normal on ultrasound, it wouldn’t mean that (s)he isn’t anemic. I went back and forth in my mind about whether I should bother Dr. Trevett and ask him to do the MCA scan a week earlier than scheduled. I decided to ask, but was preparing myself to have to push him to do it. When I told him I was anxious and I was hoping he would try an MCA scan during the ultrasound (even though it’s hard to do on babies this small) he said, “Of course! I was planning to do one today anyway.” Such a relief! I love having such an amazing, proactive doctor I can trust. He did the scan and the cutoff number for needing a blood transfusion was between 22 and 23 and baby’s numbers ranged from 15-20 so the baby is not anemic yet. What an incredible blessing. Here is a picture of our sweet baby who we love so much already:

On Monday Josh and I also had our blood drawn and sent off to The Netherlands for the non-invasive maternal blood test that will tell us whether baby is kell negative or kell positive. We should get the results back by the end of this week! Please pray that the baby is kell negative. If the baby is kell positive, (s)he will have to go through a lot of intervention to survive and will have to fight for his/her life. Thank you for your prayers and encouragement. I will let you know the test results when we get them (and baby’s gender!)

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A Bit of Good News

I’m now a couple days shy of 13 weeks and the fear is starting to set in. This is the most dangerous time of the pregnancy for the baby. My antibodies can now attack the baby since (s)he is making red blood cells, but if the baby gets anemic there is nothing the doctors can do at this point to help. The earliest the doctors can perform an intrauterine blood transfusion is 15/16 weeks.

So far, the baby looks great and I can now find baby’s heartbeat on my home doppler, so that is always comforting to hear. My first week of intensive treatments in Atlanta went really well. I have been so incredibly impressed with the medical treatment I have received at Northside Hospital. A couple of weeks ago I met with my MFM, Dr. Trevett (who reminds me so much of Dr. Moise) and my OB, Dr. Howard, and received treatment from my other two specialists Dr. Murphy and Dr. Franco. Dr. Murphy was in charge of my plasmapheresis treatments and Dr. Franco is in charge of my IVIG treatments. My insurance once again denied coverage of the plasmapheresis and IVIG treatments but Dr. Franco and his nurse, Val, worked so hard to get the treatments covered. They never asked me to do anything, they just handled it themselves and now the treatments are covered! Dr. Trevett’s nurse, Tami, has also been phenomenal, coordinating all of my treatments and appointments with various specialists and at different locations. I’m so thankful for this team of people who are working so hard to give my baby the best chance at life. I also have Dr. Moise following from afar and he is ready for us if baby gets in trouble early. This is such a different experience from my pregnancy with Lucy and the first half of my pregnancy with Nora. No fighting and challenging the doctors, no begging for the right treatment. I don’t have to print off medical studies to show the doctors how to take care of my baby, I don’t have to convince them that my baby is worth saving. I don’t have to doubt the care I am receiving. I trust my doctors and I have confidence in them. They respect me enough to listen when I tell them something and they collaborate with me for the best treatment possible. This is how healthcare should work. This is how a doctor-patient relationship should look. It is so worth the drive to have such amazing medical care and to have peace of mind. I wish I had known all of this when I was pregnant with Lucy. She would probably be alive today if I had only known in 2013 what I know now.

We had the genetic blood test done at 10 weeks to check baby for genetic conditions (trisomies) and got the results back at 11 weeks. We are so thankful to have a genetically normal, healthy baby! What a blessing! We also learned what the baby’s gender is but we won’t be telling anyone until after we find out the baby’s blood type. We feel like the blood type is more important than the gender so we will reveal the gender after we tell everyone whether baby is kell positive or kell negative. We should know those results in about 2-3 weeks. Thankfully this time I don’t have to do an amniocentesis like we did with Nora. I will be trying a new, non-invasive maternal blood test at 14 weeks to find out whether baby is kell positive or kell negative. Please pray that this baby is kell negative!

Some other good news we received came in the form of my antibody titer. I had three rounds of plasmapheresis (when they remove the plasma from my blood.) The plasma is where the antibodies are contained so the plasmapheresis treatments are used to try to lower the antibody titer (level) in my blood. When I had these treatments done with Nora my titer barely dipped at all and shot right back up to where it started (1,024.) I was expecting the same thing to happen with this pregnancy but we just found out that my titer after the third round of plasmapheresis was 64! What in the world?! My titer has never, ever been that low before so we are very happy about these results. We aren’t sure exactly why my titer went down so much this time…Could the baby be kell negative? Could the plasmapheresis treatments in Atlanta be better than the ones I had in Alabama? Maybe they removed more plasma this time? Could my body just be responding better to the treatments this time around? We don’t know, but we are thankful that the treatments seem to be working well so far. Often, in subsequent pregnancies, a woman’s titer goes up and the antibodies become more aggressive. It is rare for the antibodies to become less aggressive or for titers to go down in subsequent sensitized pregnancies. The fact that my titer got so low doesn’t mean that my baby will be less affected than Nora. It just means that the treatments are working and we can assume that my antibodies have not become more aggressive, which is very good news.

Please continue to pray for our baby. My next ultrasound is on April 24th when I am 14 weeks pregnant. I will update you after that appointment and then hopefully soon after that we will do a blood type/gender reveal! Thank you for following along and being so supportive. Our baby is blessed to have such an army of encouragers rooting him/her on!

Here is my last ultrasound of baby at around 10 weeks. Super active with a good, strong heartbeat.

 

Will This Baby Survive?

Thank you to everyone who prayed for my procedure a couple of days ago. The surgery went so much better than I ever could have imagined. It makes such a huge difference when you have good medical care and doctors you feel confident with. I now have a permacath just like I did with my last pregnancy and I have a port. Both have tubes going into my jugular, which just does not sound safe at all but they said they do it all the time. Here is a picture of the permacath and port:

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The permacath is the one with the tubes coming out and the port is the big bump under my skin (mostly covered by a bandage.) 

The permacath will be used for my three plasmapheresis treatments and then will be removed. The port will be used for my IVIG infusions and will remain in as long as I am having treatments.

Before they did the surgery on Thursday they did an ultrasound to check on the baby and everything looked good. The baby is looking a lot more like a baby and less like a gummy bear and was moving his/her little arms and legs around. I think the baby is about the size of a strawberry now. The anesthesiologist did an amazing job of sedating me during the surgery and I slept through the entire thing. The last time I had the surgery in Alabama I was awake and felt everything, which was so traumatic. I was so incredibly impressed with all of the doctors and nurses at Northside Hospital in Atlanta. It is definitely worth the inconvenience of driving four hours and finding somewhere to stay to get the best medical care for me (and the baby.)

So, a lot of people have asked me what the risks are for this baby or what the survival rate is for the baby. We asked several doctors the same questions before we decided to try for another baby because we wanted to know just how high risk the pregnancy would be. There isn’t a simple answer but there is definitely hope. Obviously because of what happened to Lucy we know that my antibodies are very aggressive and if the baby is kell positive (50% chance) then my body will attack and try to kill the baby. But like I said, there is a lot of hope for this baby and here is why:

  • My body responded well to the treatments we did with Nora so doctors think my body will respond the same way this time.
  • Nora was born full term and healthy and is our daily reminder of how well the treatments worked.
  • The baby has a 50% chance of getting my blood type (kell negative) and if (s)he does, it will be a normal pregnancy with no extra risks to the baby.
  • We have an amazing team of doctors ready to treat me and the baby and Dr. Moise is ready for us in Houston in case the baby gets anemic early.
  • We have the whole treatment plan already mapped out, no struggling with doctors to get the right monitoring or treatment.
  • My titer before the pregnancy was 512 and during my pregnancies with Lucy and Nora my titer was 1,024. This means that my antibodies have probably not gotten any stronger over time.
  • God has encouraged us over and over again regarding this baby and we trust Him.

We actually have no idea what this baby’s “survival rate” is because Lucy was given an 80% chance of surviving the pregnancy and Nora was given a 0% chance of surviving, so for us percentages don’t really mean that much.

Our main MFM is Dr. Thomas Trevett in Atlanta who was trained by Dr. Moise (from Houston.) Dr. Moise is collaborating with Dr.Trevett for my care and we are doing all of my initial treatments in Atlanta since it is much closer to Tuscaloosa than Houston. Our plan is:

  • Port and permacath surgically placed at 9 weeks.
  • Three plasmapheresis treatments done at 10 weeks (Monday, Wednesday, Friday.)
  • Permacath will be removed after the last plasmapheresis treatment.
  • First IVIG infusion done in the hospital the day following the last plasmapheresis treatment (Saturday) at 11 weeks.
  • Second IVIG infusion done in hospital the next day (Sunday.)
  • IVIG infusions will be done by a home care nurse at my house once a week from this point on.
  • Maternal blood test to find out whether baby is kell positive or kell negative done at 14 weeks. They will send my blood to The Netherlands for the test and we should know the results about a week or two later.
  • If baby is kell negative we will stop all treatments and remove my port. Baby is safe from my antibodies.
  • If baby is kell positive we will continue the IVIG treatments and will start MCA scans (ultrasound to check baby for anemia) at 15 weeks and have the scans twice a week.
  • If baby starts showing signs of anemia early (20 weeks or earlier) we will go to Houston to be treated by Dr. Moise.
  • If baby gets anemic early Dr. Moise will do an intrauterine blood transfusion (IUT) and do them every 2-3 weeks until baby is born.
  • If baby doesn’t get anemic until after 20 weeks or so, Dr. Trevett will probably handle the intrauterine blood transfusions (IUT) and do them every 2-3 weeks until baby is born.
  • IVIG is stopped when baby has his/her first IUT.
  • Phenobarbital is given the last 10 days before delivery to help baby process bilirubin after birth.
  • I will be induced at 37-38 weeks if everything goes well.

Please pray with us that the baby is kell negative so I can have a normal second half of the pregnancy. The reason we have to start treatments before we know whether baby needs them is because the earliest we can find out baby’s blood type is 15 weeks. If we waited until 15 weeks to start treatments, and the baby ended up being kell positive, then the baby would probably die. Since the treatments are pretty safe for baby, it’s best to start them now to protect baby in case (s)he is kell positive. Then if baby is kell negative we can just stop all of the treatments.

Thank you again for all of the support and encouragement you have given us so far. For those of you who are new to the blog, here is a quick recap of why my pregnancies are high risk and why I have to be doing all of these treatments to save the baby:

Quick Recap of my Anti-Kell Antibodies:

My pregnancies with Liam and Asher were normal. Apparently, Josh has a red cell antigen (which is like a blood type) called kell, which is very rare but not something dangerous. All of our kids have a 50% chance of being kell positive like Josh or kell negative like me. Asher, our second son, was kell positive and when I gave birth to him some of his blood mixed in with mine (which is common during birth.) My body saw the “foreign” blood type as something dangerous so I reacted by producing anti-kell antibodies to destroy the kell positive blood. Anti-kell antibodies are dangerous but only to people with kell positive blood (so if anyone ever gave Asher, Nora or Josh a blood transfusion using my blood, my blood would destroy their blood and make them anemic.) Once someone makes these antibodies they will produce them for the rest of their life so I will always have anti-kell antibodies. We found out about all of this after we were pregnant with Lucy, our third child. I was treated at the only hospital with a team of MFMs in the whole state of Alabama in Birmingham and they are not experienced in treating this disorder. We didn’t know this at the time and were told it was the best hospital in the state so we should trust them. Because my antibodies are very aggressive and I was not given the right monitoring or treatment (even though I asked for it) our daughter Lucy died and was stillborn. My next baby was another kell positive girl and I made sure to receive the correct monitoring and treatment during that pregnancy (thank you Dr. Moise!) and Nora was born healthy in Houston, Texas a few hours shy of 38 weeks. She is a healthy one and a half year old now.

So what happens if my body attacks the baby? The way my antibodies hurt the baby is by making the baby anemic. An intrauterine blood transfusion can be done on the baby if (s)he gets anemic, but only after 15 weeks (at the earliest.) If the baby gets anemic earlier than that, there is nothing we can do to save the baby. The treatments I am starting in a couple days (plasmapheresis and IVIG) are done to hopefully protect the baby from my antibodies until the baby is big enough to receive a blood transfusion in the womb.

 

Pregnant!

Well, that happened a lot faster than we expected but here I am, nine weeks and four days pregnant. Baby is due on our anniversary and my mother in law’s birthday, October 21st. Since it took at least 13 months to conceive Nora and I just turned 36 we thought it would take us a long time to get pregnant. I read online that it takes a year and a half for the average 36 year old to conceive. We were shocked to see two pink lines so quickly. It felt unreal, like something that happens to other people, not me. We are so thankful for this baby’s life.

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The first night after I got a positive test I was overcome with anxiety. I didn’t tell Josh, just wanted to sit with the news by myself for a bit before telling anyone. The whole night it felt like I was wrestling with demons of fear, anxiety and doubt. I absolutely could not sleep. My mind went through all of the terrible things that happened to Lucy, all of the intense treatments and procedures I would have to go through, the worry I would have to live with day after day while this baby is in danger in my womb, the fact that some people will think we are ridiculous for wanting another baby, the cost of the medical treatments, all the times I will have to ignore my boys and my Nora to focus on taking care of this baby. SO MUCH FEAR. And then suddenly, words of hope came to me and I shouted them into the darkness in my mind, “And my God lightens my darkness. For by you I can run against a troop, and by my God I can leap over a wall.” And the voices of fear and anxiety and doubt immediately were silenced. Peace washed over me and I have been filled with an incredible peace about this baby ever since. I actually had to google the words the next morning to see if it was a real verse and it is from:

2 Samuel 22:29-37  For you are my lamp, O Lord, and my God lightens my darkness. For by you I can run against a troop, and by my God I can leap over a wall. This God- His way is perfect; the word of the Lord proves true; He is a shield for all those who take refuge in Him. For who is God, but the Lord? And who is a rock, except our God? This God is my strong refuge and has made my way blameless. He made my feet like the feet of a deer and set me secure on the heights. He trains my hands for war, so that my arms can bend a bow of bronze. You have given me the shield of your salvation, and your gentleness made me great. You gave a wide place for my steps under me, and my feet did not slip.

Josh and I have been praying specifically that this baby would be kell negative and that God would fill us with peace throughout the pregnancy. We have also been praying that God would not only give me courage to get through the pregnancy, but would allow me to actually enjoy the pregnancy since it will be my last. Just a couple of weeks after we found out we were pregnant our church had a “healing service” which wasn’t anything weird…they just called people who needed healing to come to the front for prayer if they wanted to. I felt compelled to go to the front even though no one knew about my pregnancy yet. Josh and I went to the front and I was prayed over by a few people. The main one who prayed for me was a woman who had lost a baby to full term stillbirth. She prayed over me for a couple minutes and then said, “I feel like God wants me to tell you that you will be filled with peace throughout this pregnancy and He wants you to ENJOY the pregnancy.” What a sweet word from God and confirmation that He has been hearing our pleas.

I want to write more but I’m out of time. Tomorrow I will have surgery in Atlanta to have a chest port placed and a neck catheter placed. The neck catheter will be for my upcoming plasmapheresis treatments and my port will be for my IVIG treatments. Please pray for peace and courage for me. During my last pregnancy the worst, most painful part of the entire pregnancy was the surgery to insert my permacath. The doctors changed their minds at the last minute and decided they didn’t want to give me any pain meds during the procedure. It was an excruciating, panic filled procedure. Please pray that they will give me appropriate pain medication this time and the baby will tolerate the procedure. I’ll try to update after the surgery and write a blog post with more details about my treatment plan.

Thank you so much for joining us yet again on another crazy pregnancy journey. We can’t wait to see what God is going to do.

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Anti-Kell Antibodies: The worst mistake you can make.

Disclaimer: I am not a medical professional. This is what I have learned about this complication over the past few years through my experiences, through the wisdom shared in the Iso Moms group and through my research.

I still remember hearing the words, “There’s a problem with your blood work.” It was my first ultrasound and first OB appointment with my third child. I was nine weeks along. I had had no complications with my first two pregnancies so I was not prepared to hear those words. We had just seen baby Lucy on the ultrasound for the first time and everything looked perfect so I thought we were in the clear. I couldn’t really understand how my first trimester blood test results (taken at six weeks) could possibly cause any problems for the baby. The expression on my OB’s face made my heart sink, though. He sat down and tried his best to explain anti-kell antibodies to me but I didn’t understand everything he told me. He had been in the field for almost thirty years and I was his first patient with anti-kell antibodies.

It is so scary to suddenly be told that your pregnancy is “high risk” and your baby might be in danger. Most parents who are faced with this reality go home in shock and have to make the big decision that is weighing on their minds, “Do I dare Google it? Or do I protect myself from unnecessary worry and avoid the computer and trust my doctors to handle it?” Most well meaning family members and friends encourage the terrified parents NOT to Google it. I had to look it up on my computer as soon as I got home because I honestly had no idea what my OB was talking about. I wanted to know what I needed to do to protect my child and I was desperate for some idea of what the rest of my pregnancy would look like. Unfortunately there was hardly any information available so I felt lost.

I have learned so much since that day four years ago. I have heard countless stories and watched many pregnancies play out and I have noticed a trend. There is one mistake many women make during an iso (isoimmunization/alloimmunization) pregnancy. I made this mistake with Lucy, unfortunately, and it is the main reason she is not here with me today. Because of what happened with Lucy, I knew not to make this mistake again when I got pregnant with Nora and now she is a happy, healthy one year old.

So, what is the biggest mistake most people make once they discover that they are sensitized and have anti-kell antibodies (or other red cell antibodies) during pregnancy?

BLINDLY TRUSTING YOUR DOCTOR

I want to be clear before going any further, that I admire and respect doctors so much. I have always been amazed at their courage and confidence in the midst of dangerous, stressful situations. Often one small mistake can mean the difference between life and death. I don’t think I could ever do what they do on a daily basis. But, there has to be a balance. We are trained in our culture to trust our doctors and almost view them as gods. We are taught not to question them. The truth is, they are human, just like us. Isoimmunization during pregnancy is a very rare condition and most doctors and even maternal fetal medicine specialists do not see many cases on a regular basis. This does not mean that they are bad doctors, it just means that they don’t have much experience treating this condition. The treatments and protocols for iso pregnancies are constantly evolving and improving and many of them are fairly new. This means that many of the protocols in place around the world today are not up to date.

There is only one hospital in my whole state (Alabama) that treats pregnant women with anti-kell antibodies. When I was pregnant with Lucy they told me that they don’t start MCA scans until 20-22 weeks at the earliest. At my first appointment I remember sitting in the exam room waiting for the MFM (maternal fetal medicine specialist) to come in and introduce himself. Before he came in I heard him take my chart off the door and flip through it. “Anti-kell antibodies… What’s the critical titer for anti-kell?” No one answered him, so he asked down the hallway, “Does anybody know the critical titer for anti-kell?” I had done a little research online and I knew it was eight. “It’s eight,” I thought.  After several doctors discussed it they decided it was eight and then he entered the room and introduced himself. I felt very uneasy. Why didn’t he know the most basic fact about this condition? Why did I know it and he didn’t? He was supposed to be the one who was going to educate me on the condition and he was supposed to be the one who was going to protect my baby. He was the “expert” though, and the one with the medical degree so I trusted him with my baby’s life. He told me that my baby would be safe since it was my first sensitized pregnancy. Even though my titer was very high (1,024) they said the baby would probably be fine. I asked if there was a way to protect the baby from the antibodies but they said there wasn’t and that she would be ok. I had researched and found some information about plasmapheresis and IVIG so I asked the MFM if we could try it. They said it wouldn’t work, it was just experimental and I couldn’t and didn’t need to try it. The insurance wouldn’t cover it anyway unless I had lost a baby already. I let it go and trusted the doctor. (I found out later that my insurance would have covered the treatments for Lucy.)

We had many people tell us how blessed we were to be going to the best hospital in the state. We were told they were the experts and were very qualified MFMs. Looking back, I see now that the protocols and treatment options at this hospital for iso pregnancies are out of date and desperately need to be updated and changed. Waiting until 20-22 weeks to start MCA scans with a critical titer (especially one in the thousands) is extremely dangerous and reckless. I had seen online that most women had their first MCA scan by 18 weeks, some as early as 15 or 16 weeks. When I brought that up to my MFM he said they didn’t do them that early because even if the baby was anemic, there was nothing they could do for the baby that early. They told me IUTs (intrauterine blood transfusions) can’t be done until 20-24 weeks at the earliest. Again, I had read several accounts online of women having successful IUTs as early as 16, 17 and 18 weeks. But that instinct to trust the doctor and not to question or doubt their expertise remained in me and I felt very uncomfortable. I didn’t know what to do.

Many women find themselves in a similar situation. I get questions all the time like, “I have a very qualified MFM but he says I don’t need weekly MCA scans, even though my titer is critical. I don’t know what to do.” Or “My MCA scan was 1.56 but the doctor said he wants to wait a week and recheck next Tuesday. Should I ask to be seen sooner? He insisted that it would be ok to wait a week.” Or “My MFM is doing monthly titer checks and will start MCA scans when my titer hits 32. You are saying the critical titer for anti-kell is eight but my doctor disagrees.” I’ve even heard extremely confused doctors give advice such as, “Don’t worry, these antibodies can’t cross the placenta, so your baby is safe and doesn’t need to be monitored.” Or, on the opposite end of the confusion spectrum, “Since you have anti-kell antibodies you can’t have any more babies because it’s too dangerous…the fact that you were sensitized by a blood transfusion and your husband is kell negative is irrelevant.” Almost every time I hear a story about a woman losing her baby to this disorder it is because the proper treatment or monitoring was not performed.

I am not saying that you shouldn’t ever trust your doctor or MFM but YOU have as much authority as the doctor does when it comes to treatment plans and monitoring for your baby. You have to work together with the doctor to make sure your baby gets the best treatment possible. It should be a partnership between you and your MFM, a partnership in which you feel comfortable asking questions if there is concern about the treatment plan and one in which decisions are made together by you and the MFM. Ideally all of healthcare should be a partnership and patient education and involvement should be encouraged. If the doctor does not invite you to be part of the decision making process, insert yourself into the discussion. You will have to work hard and fight for your baby. Do your research (I will hopefully be adding more info here on the blog soon), join the Iso Moms facebook group (find me on facebook- Bethany Weathersby), make sure you understand isoimmunization/alloimmunization and how it affects your baby, write information down in a notebook, print off important facts and studies, and bring it all with you to your first appointment with your MFM. Never be ok with vague test results like, “You have a high titer” or “The MCA scan shows that the baby’s anemia is in the safe zone.” You cannot let the MFM make those calls since their information and protocols might be out of date. Ask for your exact titer and at every MCA scan ask for the PSV results or the MoM number and always write it down. Then YOU decide if your titer is critical or if the MoM is in the safe zone. If you are having an IUT, ask for the beginning and ending hematocrit at the start and the end of the procedure. Obviously there are tests that you cannot interpret because you are not a professional (like certain ultrasounds) but when it comes to numbers and blood levels there are exact numbers to look for or be wary of. If you aren’t sure, ask the women in the Iso Moms group. My MFMs here in Alabama see 1-2 kell cases per year at the most. The women in the Iso Moms group sees hundreds of cases per year. Be respectful and listen to the MFM but make sure that the treatments or lack of treatments he suggests match up with the information you have. Don’t be afraid to speak up if you have questions or if the MFM says something you disagree with. I know it is hard to make a suggestion to the expert or to doubt something he says, but you have to do what it takes to protect your baby. If your baby dies, they probably won’t remember your child’s name months, weeks, or even days later, but you will be broken for the rest of your life. You are one of many patients they see on a regular basis, but this is your one and only baby who can never be replaced. The mama bear instinct that was born in you the day you found out you would be a mother was placed in you for such a time as this. Harness that power and that primal need to protect your baby. Who cares if the MFM thinks you are pushy or arrogant or annoying? Your baby is depending on you. Never be afraid to speak up.

After Lucy died and I got pregnant with Nora I went back to the same MFMs that treated Lucy since they are the only ones in the whole state. I had Dr. Moise’s study on plasmapheresis and IVIG printed off and I had come up with a treatment plan (thanks to the Iso Moms group and Dr. Moise) that I was confident about. I listened to their treatment plan first, which was, “Well, you have a 50/50 chance of having a kell positive baby. Let’s hope the baby is negative. We want to see you back at 16 weeks for a check up.” If I had gone with their plan, Nora would be dead. I explained that I did not feel comfortable with their plan for my baby and I wanted to try Dr. Moise’s treatments instead. They were not excited about my suggestions. There were deep sighs and eye rolls and smirks at the corner of the mouth. I hated being the pushy one, the annoying one, the one they would all talk about later, but Lucy had lit a fire inside me that enabled me to fight with every fiber of my being for this new baby of mine. I don’t want you to have to lose a baby first before you learn that you HAVE TO FIGHT for your baby’s life. I want to light that fire in you now. Your baby deserves the best chance of life possible and your baby deserves a mama who is willing to look stupid or be annoying to save his or her life. Your child’s life is worth it. You can do this.

So, when my MFMs were less than thrilled about my treatment suggestions  I told them if they were not ok with it, that was fine, I would leave the state and find a doctor who would do it. I gave them Dr. Moise’s contact information and the study I had printed off. They said they needed time to think about it. One MFM said he would be willing to do the IVIG portion of the treatment plan, but not the plasmapheresis for some reason. Thankfully I had my first appointment with them at six weeks since we knew my antibodies were so severe, so I had time to let them discuss it and make a decision. The MFM contacted Dr. Moise to discuss the treatment and agreed to start plasmapheresis and IVIG at 11 weeks to prevent Nora from becoming anemic. The MFMs and nurses did put a lot of work into setting these treatments up and getting my insurance to cover it. I am so thankful that the MFM contacted Dr. Moise and decided to try something new because it saved my child’s life.

There have been times when I disagreed with an MFM on something, but I had to be the one to back down. It is a delicate balance, knowing when to fight and when to trust. With Nora, I desperately wanted to double my IVIG because her first MCA scans (15 and 16 weeks) were around 1.3-1.4 (some between 1.4-1.5) so I thought she was getting anemic already. My MFM said that he wouldn’t do it. I fought and pushed and pestered him, but he really didn’t feel comfortable with it. I thought it was a death sentence for my baby but after he contacted Dr. Moise and his decision was backed by the expert, I had to relent. It was HARD to let go and trust them, but I did and they were right. The IVIG did not need to be doubled. After I moved to Houston at 18 weeks and Dr. Moise took over my care, I was terrified because he only wanted to do one MCA scan per week. In Alabama they had been doing two per week. I told him it made me uncomfortable to wait a whole week between scans but he insisted that the baby would be fine until the next scan. I wasn’t sure if I should fight for more scans or trust him. I had to purposefully think through my emotions; I was so anxious about my baby that I was trying to be in control to feel safer. I considered my MFM, Dr. Moise, and acknowledged that there were no red flags so I could trust him. When I told him how nervous I was with his decision to scan only once per week he didn’t brush my concerns off. He listened and then he showed me specific things on the ultrasound that assured him Nora wasn’t anemic or in distress (her heart was not dilated at all, there were no signs of fluid building up in any of her organs, her bowels looked normal, my amniotic fluid levels were normal, her heart rate was good and she was active, the MoM was under 1.5.) I felt better after he pointed out exactly why he was ok waiting a week to rescan. I submitted and agreed to scan once a week and he was right. My baby Nora was fine. So, fight for the basics, speak up and trust your instincts, ask lots of questions and remember that sometimes you have to be the one to back down, as long as the MFM is trustworthy, doesn’t have any red flags and is following the basic treatment protocols.

There are certain red flags you can watch for when you first meet your MFM. If you see several red flags, look for a new MFM as soon as possible, even if it means you have to travel several hours to find the right one. We had to travel eleven hours away and relocate for five months to find the right MFM for us and it was completely worth it. You wouldn’t hire a babysitter that you didn’t know and weren’t sure about so be assertive about who you are trusting with your baby’s life.

Red Flags to Watch For:

  • The information given by the MFM does not match up with the basics* listed at the bottom of this blog post.
  • The MFM acts insulted and irritated when you ask questions or when you challenge something (s)he says.
  • The MFM is too busy or proud to listen to all of your concerns and answer all of your questions.
  • The MFM is not willing to learn new information from sources you bring in or consult with other doctors at a different hospital.
  • The MFM is only willing to do the minimum amount (or less) of monitoring required.
  • Your MFM is not willing to let you be part of the decision making process and does not share specific test results with you.

Notice, none of the red flags refer to lack of experience with iso pregnancies. Even doctors who have rarely encountered this disorder can be wonderful MFMs as long as they are humble and willing to learn about it (except when it comes to the actual surgical procedures like IUTs and amnios. Only let very experienced MFMs perform those procedures on you.) Some of the most proactive MFMs I’ve read about are those who started off not knowing much about iso pregnancies or how to treat them. They did their research, contacted other doctors, asked questions, listened to their patients, referred their patients to more experienced MFMs when necessary and were willing to try new treatments to save the babies, and they did.

*Here is a reminder of the basics. If your MFM doesn’t agree with this information, consider that a red flag.

  • The only way you can become sensitized to the kell antigen is from a previous pregnancy (or occasionally your current pregnancy) or a blood transfusion.
  • You need to know as soon as possible what your antibody titer is and you need to know what the critical titer is for your particular antibody. (Critical titers: anti-kell:8, anti-D:16, anti-c:16)
  • Your baby can only be affected by your antibodies if (s)he is kell positive.
  • The baby’s father should be tested for the kell antigen (NOT the antibodies!) as soon as possible.
  • If the baby’s father is negative for the kell antigen, then the baby has a 0% chance of being kell positive, which means the baby cannot be harmed by your antibodies.
  • If the baby’s father is kell positive, he needs to be phenotyped to see if he is homozygous or heterzygous for kell.
  • If the father is homozygous, the baby has a 100% chance of being kell positive.
  • If the father is heterozygous, the baby has a 50% chance of being kell positive.
  • You should have an appointment set up with an MFM by 16 weeks at the latest.
  • If your titer is below critical you need to have your titer checked regularly and an MCA scan done at some point to check the baby for anemia.
  • Titers do not always predict how aggressive the antibodies are, but often, high titers mean the baby is in more danger.
  • If your titer is 8 or above, MCA scans need to start between 16-18 weeks. No later than 18 weeks!
  • If you have a titer in the hundreds or thousands, you should have your first MCA scan at 16 weeks. I had my first one with Lucy at the end of my 17th week and it was too late by then. I had my first MCA scan with Nora at 15 weeks.
  • Just because it is your first sensitized pregnancy, it doesn’t mean the baby won’t be affected. I lost my baby in my first sensitized pregnancy.
  • The most accurate way to know for sure whether the baby is kell negative or kell positive is to do an amniocentesis around 16 weeks. Some doctors insist on doing the amnio, other doctors refuse to do it. The choice is up to you and what you feel comfortable with. You can also do a non-invasive maternal blood test to find out whether baby is kell positive or kell negative at 14 weeks.
  • You usually don’t HAVE to know whether the baby is kell positive or negative. The doctors can monitor baby as if (s)he is positive since the methods used to monitor are safe and non-invasive.
  • If your titer is critical, you should have MCA scans every week. Fetal anemia can develop very quickly so waiting over one week to do an MCA scan is putting your baby at risk.
  • When the doctors do the MCA scans, they also need to check for other signs of anemia or distress in the baby (dilated heart, echogenic bowels, ascites/fluid starting to collect in the organs, excess amniotic fluid, signs of distress, etc.)
  • If the MCA scans are showing an upward trend or are getting close to 1.5, the MCA scans can be done twice a week.
  • When your MoM gets to 1.5 or over you need to have an IUT (interuterine blood transfusion.)
  • The IUT needs to be performed by someone who has had experience performing the procedure.
  • If you have already lost a baby to these antibodies or a previous baby was seriously affected or you have a titer in the thousands, plasmapheresis and IVIG should be considered. With a little work, most insurance companies WILL cover these treatments. Here is the study Dr. Moise did proving the efficacy of these treatments for severe isoimmunization/alloimmunization in pregnant women.
  • If your baby becomes anemic very early in the pregnancy, an IUT can be performed by putting blood into the baby’s belly (IPT) instead of the umbilical cord (IVT.) You should also start IVIG treatments right away. I have seen severely anemic, hydropic babies at 16 weeks saved because the mother was started on IVIG right away. The anemia disappeared and the fetal hydrops resolved because of the IVIG.
  • Babies should be checked the day after the IUT to make sure they aren’t in distress. My MFMs insisted that Lucy did not need to be rechecked for a whole week after her IUT (even though her beginning hematocrit was six, which is extremely low.) She was dying that entire week and by the time they scanned her again it was too late. Nora (my rainbow baby who survived) always had an ultrasound 24 hours after her IUT.
  • In severe cases, IUTs can be performed only days after the first one if the baby needs it.
  • After the baby is viable, many doctors recommend steroids to develop the baby’s lungs before an IUT is performed. If an MCA scan is done after the steroids have been administered, it usually will give a false low number. The MoM will be lowered but the baby will still be anemic.
  • Here is information regarding after birth care for your baby . You can print this information off and ask if your MFM agrees with it, but often it is a neonatal team dealing with baby at that point and not so much the MFM so it might not be as relevant.

I would like to end this post by saying if you have lost a baby to these antibodies, I am so very sorry. If your baby died because (s)he did not get the right monitoring and treatment, the last thing I want you to feel is guilt. I know how hard that is, though. Lucy would probably be alive today if she had received the care Nora received and I have struggled a lot with guilt because of it. I know that when I was pregnant with Lucy, I did my very best to save my baby. I did everything I knew how to do and I know that you did too. We honor our babies’ lives by using their stories to prevent other babies from going through the same thing. Our babies felt nothing but love from us their whole lives and we should hold our heads up proudly knowing that we did the best we could to save them at the time.

This blog post was written in loving memory of:

HUDSON JOSEPH HERDMAN

LUCY DAIR WEATHERSBY

RYLEE ANN-MARIE

EPHREM FABIAN MEYER

KRISTIAN MICHAEL PINEDA

JULIA MARIE GETTMAN

GRACE DAISY MARIE PUCHMEYER

GABRIEL ZACHARIAH LUCAS

ADALYNN FAITH LUCAS

Another Baby?

 

I have started this blog post and then erased it several times. It’s a sensitive subject, growing your family, adding a baby, especially when you already have three and your pregnancies are extremely high risk. After losing a baby it can feel even more delicate and precarious to discuss pregnancy, child birth, number of children, sibling ages, age gaps and growing your family. Unfortunately many people feel compelled to share their opinions about whether other families should add another baby or stop having babies, especially when it comes to high risk pregnancies or large families. I erased and rewrote this blog post so many times because it is hard to find the right words and to express what is on my heart. We want another baby. We know God wants us to try again. Yes, the next baby could be in a lot of danger in my womb. Yes, we are afraid, but also confident that this is what God wants us to do. I don’t want this post to sound like I’m apologizing for my decision to add another baby to our family. I don’t feel like I have to defend my choice to try again. I don’t owe an explanation to anyone regarding my private decisions about family planning and trying to conceive. BUT, on the other hand, I like being open about this journey. I like sharing my story with all of you and my hope is to be the encouragement that another parent needs when they are struggling with their own family planning decisions. I want others to be inspired not to give up on their dreams of a living child, or a big family or a rainbow baby. I also need your prayers and your support and so I invite you to come on this journey with us to hopefully bring our final baby home.

2016 was the first time I’ve gone an entire year without being pregnant once since 2007. After months and months of prayer we have decided that 2017 is the year that we try for earth baby number four, our last baby. We always wanted at least five children but after developing anti-kell antibodies and losing Lucy we thought that dream was shattered. We mourned the loss of our ability to have more babies as deeply as the loss of our daughter. It was such a sad, hopeless time in our lives. But when Nora was born healthy we realized that we had found the right doctor and the right treatments that worked for us. Even though we can never get our Lucy back on this earth, it was an amazing feeling to realize that our dead dreams of growing our family had been resurrected and maybe, just maybe, we COULD have the big family we always wanted. God has reshaped our hearts and changed our dream of five kids to a dream of four kids. We desperately want Nora to have a sibling friend close in age. We want four kids around the table at Thanksgiving dinner when they are all grown up. We would love for Nora to have a sister on earth, but we know that is up to God. We also know that if we don’t try for this one last baby, we will regret it for the rest of our lives. I knew even while I was pregnant with Nora that I would want one more after her if she survived. I knew God was planting a seed in my heart and growing it for a purpose.

Are we afraid? Of course we are scared, but we trust God wholeheartedly and we trust His proddings and nudgings. We trust in His plan for our lives. Does this mean God will give us a healthy, living baby next? I have no idea. It is completely possible for God to call me to try again and then for me to step out in faith, get pregnant and lose the baby. God is God and I am not. I don’t always understand His decisions. But now, more than ever in my life, I trust Him and I feel excited about what He has waiting for me in my future. And who am I to limit God to a certain number of miracles in my life? If He calls me out upon the water, I will follow just like always. And I know the steadfast love of the Lord never ceases. His mercies never come to an end and neither do His miracles.

Job 5:8-11 As for me, I would seek God, and to God would I commit my cause, who does great things and unsearchable, marvelous things without number: He gives rain on the earth and sends waters on the fields; He sets on high those who are lowly, and those who mourn are lifted to safety.

Yes, Lord, lift us to safety. Bring us this one last baby you have placed in our hearts, and place him in our arms. Continue to do unsearchable, marvelous things in our lives.

So, the logistics… we know in some ways it will be harder to go through such a high risk pregnancy again because we now have three children to take care of during all the treatments, appointments, procedures and sickness. We asked the boys a few months ago if they were willing to go through all of that again for another baby in the family…our last little brother or sister. We reminded them that Mommy would be very sick and would be gone to appointments a lot. We reminded them that the baby could die just like Lucy or the baby could live just like Nora, but we don’t know which it will be yet. We told them that Mommy might have to move to Houston for a few months and we would miss each other so much. If they had not been on board with the idea we would have reconsidered because they will have to make sacrifices for this next baby to get here safely, and they will take the risk of having their little hearts shattered again. Josh and I were surprised at how quickly both boys jumped up and down and shouted “Yes!” and “Please have another baby Mommy!” and they were on board with all of it. Asher even begged for me to have two or three more babies and I told him is wasn’t happening, but maybe we could try for one more. Our families are supportive and willing to help us through the pregnancy again, which we are so incredibly thankful for. We couldn’t have made it through our last pregnancy without them. My mom even said she would be willing to move to Houston again if we had to. We have an amazing, supportive church family and sweet friends who are encouraging and helpful too, so we feel as ready as we ever will be.

We met with a new MFM in Atlanta who was actually trained by Dr. Moise. His name is Dr. Thomas Trevett and he is experienced with isoimmunization/alloimmunization. He even won an award for the work he did developing the use of phenobarbital at the end of the pregnancy to help babies with HDN avoid blood transfusions and high bilirubin after birth. I took phenobarbital the last ten days of my pregnancy with Nora and I truly believe it is one of the reasons why she didn’t struggle with bilirubin after she was born and didn’t have to stay in the NICU. Josh and I met with Dr. Trevett at the beginning of January for a preconception appointment to discuss a future pregnancy and to see if he was even willing to take me on. My case is risky and the treatments will be pretty extreme so I would totally understand if an MFM was hesitant to accept me as a patient. He was so great. He understood everything about anti-kell antibodies and he follows Dr Moise’s protocols already. His course of treatment for me was the same one I had decided on already and very similar to what we did to save Nora. Dr. Trevett and I decided to start the treatments a little earlier than we did with Nora. During my pregnancy with Nora we had to struggle with the insurance company for a while to get them to cover the plasmapheresis and IVIG so the treatments were started a week or two later than I would have liked. I started plasmapheresis at 11 weeks and IVIG at 12 weeks in my last pregnancy and Dr Trevett will start them a week or two earlier with my next pregnancy, just to be extra proactive. Dr. Moise and Dr. Trevett have agreed to collaborate together for my care, which I appreciate so much. If the baby needs an early IUT before 20 weeks I will go to Houston to be treated by Dr. Moise, who has more experience doing early IUTs. If the baby doesn’t need an IUT until later in the pregnancy Dr Trevett will do the IUTs. The main reason we are using both doctors is because Atlanta is about a four hour drive from us and Houston is about an eleven hour drive. It would be much easier for me to take care of my three kids if I didn’t have to relocate to Houston for the whole pregnancy. We are still praying that God would give us a kell negative baby so that the baby could be safe from my antibodies. Supposedly, each baby of ours has a 50% chance of being kell positive or kell negative. BUT we know for sure that Asher, Lucy and Nora are all kell positive and Liam might be, so for some reason Josh’s genes seem to dominate. Maybe this will finally be our kell negative baby?

Please join us in praying for our future baby, that (s)he would be kell negative and would be born healthy. Please pray that Nora would get to be a big sister and have a sibling close in age. She would LOVE to have a real baby to take care of and boss around!

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Four Years In Heaven

Oh my baby, how I miss you. Every day, every minute for these past four years I have ached for you. That chamber of my heart that is only Lucy shaped remains empty. I know how your biggest brother Liam feels in my arms, how your big brother Asher feels in my arms and how your baby sister Nora feels in my arms, but I don’t know how you feel and my arms ache for you. A mama’s arms belong around her babies. I wish you could be here to play with your little sister Nora, you would love her so much. Your absence in our family is felt every single day. I see the space where you should be that nobody else sees. I miss you.

I miss you.

It has been four years since Lucy’s heart stopped and mine was irreparably broken. It is a feat, surviving four whole years without your child. I feel like I should be awarded a medal just for still being here, four years later, without her. The beautiful thing about living this life with my God is that He has more for us on this earth than just surviving. The past four years have been the saddest and most difficult of my entire life, but they have also been the most beautiful, the most redemptive, and the most productive years of my life.

As most of you know, when Lucy died I was told I could not have any more babies. It felt like an extra cruel blow because of who God had created me to be. He made me very maternal from infancy. I have always been obsessed with babies. They were the best thing in the world to me. My undergraduate degree is in Early Childhood Education. I was told that a degree in Elementary Education would be more useful so I eventually agreed to go one more semester to also get my Elementary Ed degree, but all I really cared about was getting that Early Childhood degree because I just wanted to teach the babies. My whole life I waited and dreamed about having a baby of my own. I wanted to fast forward time until I held my baby in my arms for the first time. My greatest wish for my life was to have a big family; LOTS of babies. For God to allow my baby to die and then to leave me with a pregnancy condition that would repeat itself and make my pregnancies “fatal” seemed so cruel. It felt like a custom made attack, designed to destroy the most beloved part of who I was.

I couldn’t even look at babies after Lucy died, they physically nauseated me. During my counseling sessions I had therapy for PTSD and had to work through the most terrifying scenarios like, “You’re at the grocery store and suddenly a woman comes around the corner carrying a baby, what do you do?” I remember being on a flight only a couple months after losing Lucy and there was a baby next to me on the airplane. I felt like I was going to have a panic attack. Every sound she made caused a physical pain in my chest. I could not believe how agonizing this adorable baby next to me was. My pain originated from my deep love for babies, especially my love for my baby girl who had been killed by my own body, and the love I had for my future babies who would never exist because of anti-kell antibodies. Every baby I saw reminded me of my dead dreams for my family and my dead daughter. And if I’m truly honest, they represented the lie that for some reason God loved those other parents more than He loved me because their babies were alive. The parents of the baby next to me on the airplane seemed to sense my discomfort. They probably thought I was just one of those adults who gets irritated with loud babies on planes. If only they knew the truth.

If only I knew the truth, that God was not using my tragedies as a custom made weapon to destroy me. God was going to take my little Lucy’s life and my tragedies and He was going to fashion them into a custom made ministry just for me. And guess who God has me ministering to now? Women and their BABIES. Beautiful babies who are possibly in danger like Lucy was. Babies in Pakistan, babies in Canada, babies in Australia and Egypt, babies in the UK and the US, babies in Germany and Israel, Cambodia, Switzerland, Russia, France and even babies right here in Alabama. I get to help babies every single day and it is some of the most rewarding work I have ever done. I get to encourage and empower women who have babies in the womb, women who have babies in heaven, women with babies waiting in their future, women with newborns and women with broken hearts. I love these women, and I desperately love their babies. God uses every single one of these parents who reaches out to me and He uses every single baby to restore a small piece of my broken heart and to restore my hope in Him.

Here I am four years later, and now I am able to look at a baby and see redemption, hope and the greatness of God. Oh the redemption that God has brought through these babies and their moms!

And so, without any more delay, here are some of the beautiful babies that have been helped through Lucy’s story and my blog. Thank you Jesus, for each one of these lives that has been touched by my Lucy’s.

COOPER cooper

CLAIREclaire

EVAeva

JESSA JADEjessa-jade

TYLERtyler

JACOBjacob

KRISTIAN (in heaven with Lucy) and MIKAHkristian-and-mikah

JULIA JOYjulia-joy

SAGE (in heaven with Lucy)sage

KETHRYNkethryn

ROSE with big brother and sister Logan and Havenrose-with-big-brother-and-sister-logan-and-haven

SHUA, ARI and MOSELLEshua-ari-and-moselle

LIAMliam

ELLIEellie

MILAmila

MATILDAmatilda

LUCY ANNElucy-anne

GABRIELLA GRACEgabriella-grace

OSCARoscar

WESLEY JAMESwesley-james

SKYLAR ROSEskylar-rose

AVAava

BRIANA ANNEbriana-anne

LANGSTONlangston

OWEN BLAKE (being born right now, on Lucy’s birthday!)owen-blake

HADRIANhadrian

BABY BOY ROBILLIARDrobilliard

ASAIAHasaiah

NYAHnyah

And of course, NORA JULIET who would not be here if it weren’t for Lucy

And this is baby Hudson, whose mom did not come across my blog until a few days after her son was stillborn this past December. This is why I push so hard to get Lucy’s story out into the world, because Hudson would be here today if only the doctors had provided the right monitoring and treatment. Lucy would probably be here today if she had been given the correct monitoring and treatment too. I will keep telling our story and fighting for the Hudsons and the Lucys who deserve to be here with us.

“I wish I had read your blog whilst pregnant because I would have had the knowledge I have now and possibly could have saved my baby Hudson who was born sleeping on 29th December 2016 due to Anti-K antibodies and having no close monitoring – I was totally unaware of what most of it all meant until I read your blog.”

HUDSONhudson

The love I feel for these babies is unreal. The very tragedy I thought would push babies out of my life has brought so many babies into my life that I have a deep affection for. They are my “yes” from God.

For anyone who feels like God has turned His back on you, for anyone who has suffered unimaginable loss and for those whose lives have not turned out the way they planned, just decide to trust God anyway. Because I am convinced that when there is great loss combined with great trust in God, miraculous things happen. Yes, even a one pound baby girl who never took a breath outside of the womb can leave a legacy that reaches throughout the world.

Happy fourth birthday in heaven, Lucy Dair. I am proud to be your mama. You were worth it all. Four years closer to having you forever. Despite all the pain and agony of waiting to have you, I absolutely love being your mama.

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