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!

 

I Miss My Sister

Nora has become obsessed with her sister lately. It has taken me completely off guard. I don’t really know how to parent her in this situation since it’s all new to me. Nora wasn’t around when I was pregnant with Lucy and she wasn’t here when Lucy died or afterwards when I was paralyzed by my grief. I don’t think she has ever seen me cry over Lucy since I have more control over my tears now and when I lose control I can still hide it from her. Ever since Nora was born I’ve carried this terrible ache inside for her to know her sister Lucy. I have grieved for Nora’s loss many times, but I have been very intentional about not projecting that grief onto Nora. It’s not Nora’s grief, it’s mine. So I don’t ever say things like, “You would have a six year old sister now if Lucy were alive.” Or, “I wish your sister was here so you could play with her.” If anything I have tried to lessen the loss for Nora by avoiding the topic altogether and never showing her my grief over the loss of her relationship with her sister.

Something incredible has been happening though. As Nora grows and understands more about the world around her, she is becoming aware of her sister’s absence all on her own. I don’t know how or why but her grief over the loss of Lucy has been growing and intensifying. There’s something beautiful about the fact that a four year old can understand the magnitude of the loss of her sister who was stillborn before she even existed. It’s like she knows what she is missing. She often cries in bed at night for her sister Lucy. Sometimes she cries in the middle of the day and nothing I say can soothe her. Often, if she plays with an older girl around Lucy’s age she will come home and cry saying, “I miss my sista Lucy. When can I go play with her?” Nora sometimes asks what kind of toys Lucy has and she asks if she can play with her toys too.

I have tried telling her how happy Lucy is in heaven and that we can see her one day but that often leads to more anxiety because Nora knows she has to die in order to be with Lucy. I’ve tried telling her how fun Callum and her big brothers are and even though she does enjoy her brothers so much, it doesn’t make her loss any less painful. She says she just misses Lucy, not them. I’ve even tried asking her if she maybe wants a baby sister and she says, “No, I want my big sister Lucy.” The other day as I was trying to soothe Nora while she cried, I suddenly realized that I was using all of the typical “encouragements” that others used on me when I was in deep mourning, even though I know they don’t work. “Be thankful you have two healthy kids.” Yes, but they aren’t Lucy. “She is safe and happy in heaven.” Yes but I want my baby with me HERE. “Maybe you can have more kids.” Yes, but they won’t replace the one who is missing. No one can. Why do I think these weak reassurances will work on my daughter when they never work on anyone missing a person they love? I use these phrases because I don’t know what else to do and I want to fix it. I want to lessen Nora’s pain somehow. And this is exactly why other people have used these phrases on me in the past. They just wanted to comfort and lessen my pain.

Yesterday as we were driving Nora asked, “Where was I when you were a little girl?” and I said, “You weren’t alive yet. That was long before you were born.” “Oh, so I was stillborn?” she asks innocently. I catch my breath. How does she know that word? I have never told her what that word means. “No, you weren’t stillborn.” She furrows her brow, “But you said I wasn’t alive so that means I was stillborn.” Wow. She is incredible and I have no idea how to be her mother sometimes. I don’t know how to lessen her pain or fill the gap that her big sister left behind. No one can besides God. But I trust that He can redeem Nora’s losses just like He promises to redeem mine.

I am reminded of the many ripples of destruction that continue to crash through our lives and our family since Lucy died. How many other families are experiencing ripples from their own tragedies that I can’t see? Nora’s grief has humbled me and reminded me to be kind and loving to those around me. Just because their loss or their trauma was a long time ago it doesn’t mean they aren’t suffering from the ripples created by that event. Just because I can’t see the suffering on the surface it does’t mean they aren’t struggling. My heart has been softened towards those on the outside of grief too, who don’t know what to say but desperately want to lessen the pain of others. Maybe their phrases are empty words that don’t heal, but they are just trying their best like I am when Nora is crying for her sister and all I want is to take away her suffering.

So, my daughters have humbled me and challenged me to love others better and to forgive when the words aren’t perfect, to give others the benefit of the doubt and to remember that God alone can redeem our deepest losses.

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Silently Suffering After Pregnancy Loss

I’m so proud of my friend, Cassandra Blomberg, for being brave enough to share her personal story of loss and to help break the silence surrounding miscarriage and stillbirth. Similar to the way I lost Lucy, Cassandra lost her daughter, Violet, to anti-c antibodies in her first sensitized pregnancy. She and I had miscarriages around the same time after we lost our daughters. We also both had our rainbow babies around the same time and they survived because of the same treatments (plasmapheresis and IVIG.) Cassandra was the only person I knew of who ever tried to have a second baby using plasmapheresis and IVIG. Her healthy baby Beckett inspired us and gave us the courage to try for our baby Callum (thank you Beckett!)  Our society desperately needs to change how we view and talk about miscarriage and stillbirth. Here is Cassandra’s Tedx Talk “Silently Suffering After Pregnancy Loss”:

 

FIVE

It is hard to believe that my daughter would be turning five this year if she had been born alive. How did I survive five whole years with this ache inside my chest? I wonder who she would be today. Would she be reading super early like her brothers or would she show no interest in letters like her sister? Would she be doing gymnastics like I was at five? Would she have curly hair like Nora? Would Lucy be stubborn and independent like I was as a kid? Or would she be a rule follower like her Daddy? Would she be a tomboy or would she prefer Barbies? I wonder what her voice sounds like. I wonder who her little friends would be. Oh I miss my baby so much.

I’ve been telling Nora about her big sister lately and she accepts it all as completely normal, like everyone has a sister in heaven. The other day I got my Lucy box down and let Nora look through it. She loved seeing her sister’s pillow, dress, hat, blanket, pictures and even the many cards we have saved from our friends and family.

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I know that right now Nora doesn’t really understand what it means to lose a sister, but one day when she is older she will grieve the loss of that special relationship. There is still so much heartache to come.

Over the past couple of weeks I’ve been reading back in my journal from the days leading up to Lucy’s death. I can tell from the buoyancy of my writing that I was a different person then. Cheerful and optimistic. Sure that God would save her if I had enough faith. Then at the end of my 17th week of pregnancy (or possibly 18th week since they changed her due date a couple times) I wrote:

My baby might die tomorrow. She has to have an intrauterine blood transfusion at 17 weeks 6 days. I sobbed in the shower tonight crying out to God for her life. “I want to keep her! I want to keep her!” I cried over and over again. God said, “Whatever happens, you have her for eternity. You have her for eternity. Trust me.” And these thoughts have calmed my spirit and given me peace:

*I have her for eternity.

*I will give her life for God’s glory if He asks.

*She is HIS anyway.

*Abraham gave his son to God. God gave His Son for us. I will hold my daughter’s life with an open hand.

*My life’s purpose is to glorify God, not to keep my daughter.

*He will sustain me.

*I will be strong and courageous.

I remember how desperately I cried out to God that night, begging Him to let me keep Lucy. I think I knew then that God was not going to save her. Even though she survived the IUT the following day, she died eight days later while we watched on ultrasound. But that night when I begged for her life I sensed God asking me to place her in his arms. I look at those truths I wrote down five years ago and they give me courage to continue trusting God with this great loss. They give me courage to face the future without her. All of the days to come, without my sweet girl. I can do this, no matter how much I hate it. If I could be brave enough then to give my girl back to God, I can be brave today too. Because the truth is, it still takes an incredible amount of might to live each day without my child. It takes courage and grit and forgiveness and a whole lot of energy.

Three days before Lucy died I wrote this quote down by Charles Spurgeon:

Don’t you know that day dawns after night, showers displace drought, and spring and summer follow winter? Then, have hope! Hope forever, for God will not fail you.

Hope forever. As the days and the weeks and the years pass, more and more light slowly emerges. The dawn after our night. Today I can feel joy and contentment and I can sing again and I laugh freely most of the time. I go days and sometimes weeks without crying. None of these things seemed possible five years ago when I watched my baby’s heart stop and my world splintered. But God has been true to His word. When He promised me five years ago on that rainy, dreary day in that horrible hospital room, “I WILL REDEEM IT” He was telling the truth. He has been persistent in His quest to redeem the many things that died on February 8th, 2013 along with Lucy. And one day when I arrive in heaven, He will redeem the loss of my daughter and all of the missed moments with her here on earth. Yes, I will hope forever, for God will not fail me.

Three days after Lucy died when I was at one of the lowest points of my life I wrote this simple journal entry:

I TRUST HIM.

I trust you, Lord. Show me your goodness. Show me your hope. Show me what you are going to do with this sacrifice of pain and loss. Make her little life worth something….something so beautiful.

I TRUST YOU.

And now I get to show you the goodness and the hope, the beautiful thing God is doing with Lucy’s life. Because of my experience with her and because of this blog, I get to connect with parents from all over the world who are dealing with a sensitized pregnancy and help them advocate for the right care. You know, I invest in each one of my children’s lives daily; Liam, Asher, Nora and Callum. I don’t get to invest in Lucy’s life, so instead, I invest the time I would be spending with Lucy in these babies and their parents. My Facebook feed is full of pregnant bellies and ultrasound updates and newborn babies and pregnancy announcements…all the things that used to trigger my PTSD and send me spiraling. Now they are some of my greatest joys in life. Here are some of the beautiful babies who were impacted by Lucy and me over the past year. (There were so many babies that I couldn’t include each one’s story so I just included a couple and then the names and pictures of the rest of them.)

 “My Kell baby Nancy, nearly 6 months old. She wouldn’t be here now if it wasn’t for your blog and the invaluable help of the ISO moms group. The knowledge I gained from you helped me to ensure she had the best care, if I hadn’t fought so hard for more regular MCA scans she would have been so anaemic we would’ve lost her. I’m eternally grateful. Thinking of you and your precious Lucy xxx ❤️”

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“After a shocking loss of our daughter in 2016 I was told I should never get pregnant again because my antibodies would cause another loss. Long story short, I found Bethany’s blog and the ISO group which gave me hope again for future children. My rainbow baby Cameron was born this past summer and words can not describe how grateful I am for Bethany sharing Lucy’s story. If it wasn’t for her my son would not be here today. ❤️”
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Isaiah

Gabriella Grace

Sloan

Alexander

Cole

Emmett

Maxwell Raymond “Bay”

Halle Ann 

Nate

Timothy James

Baby M

Olivia

Crosby

Sawyer

Freddy and Max (and baby on the way)

Grace

Sylvie

Baby G

Ava Irene

Benjamin

Baby P

Baby H

Bennett

Oliver

Baby T

Sadie-Mae

Boone

Max

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Callum Joseph Thomasimg_9053

And for the babies who are not pictured here, but who are just as important as the ones who survived, you are greatly missed and deeply loved. The ones who don’t come home from the hospital in their mamas’ arms, like Nancy Stella and Freya Louise and Connor James and all of the precious babies who were lost, these babies often have a greater impact on my life than the ones who lived. I feel great comfort knowing Lucy has such amazing little friends in heaven with her.

Happy birthday in heaven, Lucy Dair. I ache for you every day. I see all the empty spaces where you should be. Five years closer to having you forever. I love you and I’m so proud to be your mommy.

 

UAB MFMs and Maternal Alloimmunization

I have had this blog post mostly written and sitting in my draft folder for months now, waiting to be published. It weighs on me and I think about it often, rewriting certain sentences in my mind, adding and editing mentally while I go about my tasks during the day. Mostly, I want the whole post to be saturated with forgiveness and grace, but also truth. The doctors I write about are real people, and I don’t want to attack their character or publicly shame them for mistakes they made. What if blog posts were written about me every time I made a mistake? What if I had a job where my actions had life or death consequences? That would be so difficult. And these doctors have done some truly wonderful things for me, like the amniocentesis and pushing the insurance company to cover treatments during my pregnancy with Nora (before transferring to Dr. Moise.) But truth is incredibly important and I feel deep in my heart that lives could be at risk if I don’t share the truth. I feel a heavy responsibility to protect families from experiencing what our family has experienced. I have forgiven the doctors at UAB for their mistakes. I forgive them over and over again when my heart breaks yet again for my girl and I forgive them again when I run through the events leading up to her death for the hundredth time. The one person I struggle to forgive the most is myself. As a mother it is my job to protect my children and I feel like I failed Lucy in the worst way, even though I really did try my best at the time to save her. I just didn’t understand the disorder enough back then. I was confused and scared and scrambling around grasping for information about anti-Kell antibodies (which was very hard to find.) I didn’t know the treatment options available or the proper monitoring protocols. I thought I could trust my MFM specialists to know all of these things and I placed my daughter’s life in their hands. There was so much I didn’t know when I was pregnant with Lucy in 2013. But I know now, and I cannot quietly sit by and leave other babies to Lucy’s fate. Hopefully I can spread the word and get the right information out there to protect families in Alabama dealing with alloimmunization and HDFN.

A couple of weeks before I gave birth to Callum, I finally had my follow up appointment with the MFMs at UAB hospital to discuss what happened with Lucy. After Lucy was stillborn, I scheduled a preconception appointment at UAB to discuss everything that happened during the pregnancy and her autopsy results, placenta analysis and blood work results. One of the head MFMs called me a few weeks after Lucy died and said he thought I had had a fetal maternal hemorrhage and that was the reason we lost Lucy, not just the anti-Kell antibodies. He said there was no reason for me to have the follow up appointment and he encouraged me to cancel it. I was ecstatic that my antibodies weren’t necessarily to blame for Lucy’s death (supposedly) and I canceled the appointment like he suggested. This meant that I never got to discuss what happened during my pregnancy with Lucy or go over the decisions that the MFMs made. No one was held accountable. I had no idea if they learned anything from my experience. It haunted me over the years and the questions I had for the doctors just bounced around in my brain that whole time, unanswered.

UAB is good at many things, and even the MFMs at UAB might be great at treating common pregnancy complications. But when it comes to maternal alloimmunization their protocols are out of date, possibly putting unborn babies at risk. They start MCA scans (the special ultrasound that checks baby for anemia) at around 22 weeks even with patients who have critical titers. This was their plan for Lucy, even though my Kell titer was 1,024 (critical titer was 8 at the time.) I asked them many times during my pregnancy to do an MCA scan to make sure Lucy wasn’t anemic. They refused over and over again. It is a non-invasive, quick ultrasound and it is the only noninvasive way to check the baby for anemia. Even while they were doing a level II ultrasound at 16 weeks, spending an hour with the ultrasound wand on my belly, when I asked them to please do the MCA scan to see if she was anemic they wouldn’t do it and they missed the anemia that day because of it. The day after I gave birth to my lifeless daughter, I asked Dr. O if they would change their protocols and start scanning women with critical titers sooner now because they saw what happened to Lucy. He said, “We don’t change protocols just because of one baby.” Naively, I still thought that surely they would have learned to be more cautious when treating other alloimmunized women because of what happened with Lucy. That was one of the only thoughts that gave me comfort after Lucy died. Maybe other babies would be saved because of Lucy. But about a year or two ago I was contacted by another Kell mama in Alabama, and I encouraged and helped her through her pregnancy. To my horror, even though her titer was well over critical, the MFMs at UAB told her she would have her first MCA scan sometime between 20-24 weeks. It was apparent from her experiences with them that they had changed nothing after losing Lucy. After realizing that, I knew I had to meet with them to discuss everything that happened with Lucy and urge them to treat this disorder more seriously. If they had updated their care practices after Lucy died, I would not have felt compelled to have this meeting with them. By the way, women with critical titers are supposed to have their first MCA scan between 16-18 weeks to make sure the fetal anemia is caught in time to treat. Nora had her first MCA scan at 15 weeks and Callum had his first MCA scan at 14 weeks. Fetal anemia is only treatable if it is detected.

So, I met with the head of the MFM department, Dr. D and one of the main MFMs who handled my pregnancy with Lucy (Dr. O) a couple of weeks before giving birth to Callum. I really appreciated them agreeing to this appointment since it had been over four years since Lucy died. I can only imagine how many patients they had treated in the previous four years, so I’m actually surprised that they remembered anything from my pregnancy (and maybe they couldn’t remember everything which is why some responses were so vague?)

I know it must have seemed strange to them that I would want to come in four and a half years after losing my baby to discuss what happened. They were polite and respectful and I know it was probably hard to do that during this conversation. The one thing I appreciate most is that Dr. O referred to my daughter as Lucy. He didn’t call her “the baby” or “fetus” he called her Lucy and that meant the world to me. I wish other people in my life would just call her Lucy and say her name like they say my other children’s names. It was unexpectedly refreshing and I appreciate him doing that for me.

Unfortunately, I left the appointment feeling discouraged, disappointed and depressed, but also more determined than ever to keep fighting for babies like Lucy, Nora and Callum. Where do I even start? The doctors did not take any responsibility for what happened to Lucy. Many of my questions were not answered in the way I hoped they would be; some weren’t answered at all. I was hoping that the doctors had actual medical reasons for the choices they made regarding my treatment. I think that would have given me some peace. For example, when I asked, “Why did you wait a whole week to scan Lucy after the IUT, especially since her hematocrit was 6?” Pause….”Well, that’s just what we do.” Another example, “When I didn’t feel Lucy move again after the IUT and I came into labor and delivery a few days later, why wouldn’t you do an MCA scan to check her for anemia even though I asked over and over again for one? Why was I sent home? She was dying.” They said something about MCA scans possibly being inaccurate after an IUT, but they didn’t know why I was sent home. They just didn’t have an answer. If they had listened when I insisted something wasn’t right and she wasn’t moving, and checked her anemia levels then they possibly could have saved her.

When I asked, “In the past four years since Lucy died, what has UAB done to ensure that this doesn’t happen to another baby?” They couldn’t tell me. I was given a vague response about how what happened to Lucy was very rare and most women don’t have a titer as high as mine. I talked about how when I came back with my second Kell pregnancy, the MFM told me I should just hope that the baby was Kell negative and to come back at 16 weeks for an amniocentesis. I showed them a picture of Nora and said that if I had trusted their expertise and gone with their treatment plan, she would be dead today. They had nothing to say, except, “Well, maybe she would have survived without the plasmapheresis and IVIG? We don’t know for sure.” “But you were willing to take that risk with my daughter’s life, even after seeing what happened with Lucy?” Silence.

Both doctors remained determined to stick with their MCA start time of about 22 weeks for women with critical titers. I tried explaining that a lot of babies would not be alive by 22 weeks if they waited that long before being checked for anemia, but they disagreed. They said there are no specific guidelines set by ACOG saying when doctors HAVE to start MCA scans so they usually go case by case and decide when to scan based on each specific woman and her history. I explained that this is exactly what terrifies me since with my specific case, they saw that I had a Kell titer of 1,024 and decided that the best course of action would be to start scans around 22 weeks. One doctor spoke up, “Well we have learned since treating you that sometimes even in first sensitized pregnancies, babies can be affected earlier than 22 weeks if the titer is very high and the woman has anti-Kell.” So I asked him if a woman came in today with my exact situation, (first sensitized pregnancy, anti-Kell titer of 1,024) what would the treatment plan look like? The doctor said they would not suggest plasmapheresis and IVIG (the treatments that saved Nora and Callum’s lives) but “now, we would suggest starting MCA scans as early as 18-20 weeks.” This is the most ridiculous thing since Lucy died because they caught the anemia too late, even with a scan (that I basically forced them to do) at 17 weeks and 6 days.

I won’t go through all of  my specific questions and their answers. I think the most unsettling thing about the whole appointment was how nonchalant they seemed about it all. I tried to convey, somehow, with my inadequate words how important Lucy was to us, and how their choices had impacted our family forever. I told them I would have rather died than have to live without her. I would have gladly taken her place if I had been given the chance. How could I explain how precious my baby girl is to me? I just sobbed. My mom told them that people trust UAB, we trusted UAB with our baby, and they need to take that responsibility seriously. I told them they had so many chances to save Lucy and they let her down over and over again. They said nothing. No apology, no promise to protect other babies, no real change. I’m guessing they decided beforehand not to admit to any wrongdoing during our conversation and they clung to that fiercely.

When I said it seems like UAB tries to do the least amount of monitoring possible, instead of being extra cautious with these little lives, they did not deny it. When I said, “Many women ask me for MFM recommendations in Alabama. Some ask specifically if I could recommend UAB. I always wish that I could recommend UAB but as far as I know, I can’t because I don’t think their babies would be safe here. When they ask me if they should go to UAB for treatment, what should I tell them?” Silence…and a shrug of the shoulders. Right at the end of the appointment when we were getting up to leave, Dr. O did say that Lucy was important to them and she had affected them in some ways. He just couldn’t tell me how they have improved and I haven’t seen any evidence of that. One thing he did agreed to do was scan a woman with a critical titer before 22 weeks if she specifically asked for and insisted on the MCA scan. But how is a woman supposed to know she has to request this type of scan in order for her baby to receive the right monitoring? The MFMs are the ones who should be providing the right care even if a mother doesn’t insist on the specific tests by name. I told them that many hospitals all over the world start MCA scans by 18 weeks for women with critical titers. Dr. O asked which ones but I didn’t have the names of the actual hospitals on hand. He said if I gave him a list of other hospitals and practices that start MCA scans by 18 weeks then he would consider changing their policy. I promised him that I would.

I went in to this appointment giving these MFMs the benefit of the doubt. I was hopeful that maybe I had just projected my grief of losing my daughter onto them and that is why I thought they had given us such inadequate care, but they only confirmed what I had thought. They do treat alloimmunization/HDFN with nonchalance and they are resistant to change, even if it means babies might die.

Here is my warning: If you are pregnant and you live in Alabama and you found out that you have tested positive for anti-Kell antibodies, or anti-D antibodies, anti-c, anti-E, anti-jka, etc. do not trust UAB to protect your baby’s life. From my experience and my observations, I can only conclude that they will not provide adequate monitoring or treatment and your child will be in danger under their care.

From my experience, the best care for women facing alloimmunization can be found outside of the state of Alabama. Dr. Thomas Trevett in Atlanta is amazing and so is Dr. Ken Moise in Houston. Those are my two recommendations if you want phenomenal care for you and your child. My OB here in Tuscaloosa will now be referring any of his “ISO moms” who come up with a positive antibody screen to Dr. Trevett in Atlanta, bypassing UAB altogether. It is so worth the drive. I’m sure there are also other MFMs out of state who know how to properly treat alloimmunization/HDFN.

It sounds ridiculously dramatic, but as I left that appointment at UAB, I had the very real sense that I was walking out of a dangerous place, and I wanted to run to get away. I placed my hands on my swollen belly with my healthy kicking baby boy inside and thanked God that my son was safe. I left that appointment in awe of Dr. Trevett and Dr. Moise, wishing I could hug them and express my deep gratitude for them. I think that was the moment that I knew Callum’s middle names would be Joseph, after Dr. Moise and Thomas, after Dr. Trevett. They respect the trust that we put in them to protect our children. They take every step possible to provide the best monitoring and treatment for their patients. They truly care about our babies. I am so glad I left Alabama for Nora and Callum, and I am devastated all over again that I stayed at UAB with my precious Lucy. I just had no idea. What I would give to reverse time and leave the state for better care during my pregnancy with Lucy.

A couple of months after my appointment at UAB, I sent Dr. D and Dr. O a list of 57 different hospitals and medical practices around the world that start MCA scans by 18 weeks, including a real life example of a woman treated at each hospital. I included the patient’s initials, her antibody, her titer and when they performed her first MCA scan. Dr. D replied,

“Thank you for your continued interest and info. We are in the process of rewriting our guidelines and plan to evaluate MCA doppler in the second trimester (16 -18 weeks) in appropriate patients. I’ll let you know our final pathway.”

This felt very promising! I still have not heard back from them, but if they decide to update their protocols I will definitely come back and update this blog post with their improvements. Until then, I strongly urge you to skip UAB hospital if you are dealing with alloimmunization during pregnancy and find an MFM who will treat your pregnancy with caution and expertise. Or, you could have your basic scans done at UAB and have a more experienced MFM (such as Dr. Trevett) on standby to perform any IUTs needed during the pregnancy. With a little urging, the MFMs at UAB will collaborate with other MFMs for your care.

One last thought: When I left my appointment I felt so incredibly defeated. My grief over my daughter’s death just swamped me like a big wave. It felt like she meant nothing to them, like her life was worthless. It gutted me all over again to think that her death was preventable if only I had known then what I know now. And the fact that the people who should have saved her but didn’t, had just denied their role in her death made it hurt even worse. But that morning before my appointment my mom had shared this verse with me-

Lamentations 3:57-59 You came near when I called on you; you said, “Do not fear!” You have taken up my cause, O Lord, you have redeemed my life. You have seen the wrong done to me, O Lord; judge my cause.”

And that verse came to mind as I drove away from UAB hospital. None of this was out of God’s control. UAB might have failed my daughter but God did not. Even though I can’t trust UAB, I can absolutely trust God. And even if my daughter’s worth was lost on those doctors, she was intricately woven together by the Creator of the universe and He treasures her. God desperately loves Lucy even more than I love her and that gives me peace. And the injustice done to Lucy and me? God sees the wrong done to us and He will judge our cause. I cannot force them to see Lucy’s worth or to be accountable for their actions but I can hopefully protect other babies in Alabama from experiencing what I went through.

Still in the NICU

Well, Callum definitely won’t be going home this weekend. He has had a few setbacks so I’m trying to readjust my timeline and my expectations on when we can bring home our baby. His hematocrit dropped to 25, which isn’t too bad (they usually transfuse between 22-24) but he wasn’t feeding well, he was having some oxygen desats and his retic was still super low (meaning he isn’t making his own blood yet) so they decided to go ahead and do the blood transfusion. They put an IV in his foot which made me so sad because it looked really painful. Since it took a while for the blood to be available I went back to the RMH to sleep and when I came back in the morning he had an IV in his hand because the foot IV didn’t work. He had just finished having his blood transfusion when I got there and his skin looked so pink and healthy.

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He was awake and hungry so I breastfed him and he took a whole feeding without falling asleep, which is awesome! A few minutes later I heard him filling up his diaper so I decided to change him. When I opened up his diaper there was quite a bit of blood mixed in with the poop. The doctor came to look at it and she said he could either have a dairy allergy or he could have something called Transfusion Related Gut Injury (TRAGI) which can sometimes happen in micro-preemies who have blood transfusions. He’s definitely not a micro-preemie so we are hoping it is just a dairy allergy. The timing, though, suggests that it might have something to do with the blood transfusion. The doctor is x-raying his abdomen right now to try to get answers and I’m cutting all dairy out of my diet just in case. They are putting him on gut rest until they can figure out what is going on. Callum’s ferritin (iron) levels are really high on top of all of this. Before the blood transfusion his ferritin level was 1,216 and the normal range is 25-250. Since he was given adult donor blood which has high levels of iron in it, his levels are probably much higher now. They are running liver function tests to see if his liver is being affected by all of this extra iron in his body.

It is hard not knowing how much longer we have to live here in Atlanta separated from our family and our normal life and our sweet baby Callum. And can I just say how absolutely unnatural and weird it is to have a NICU baby in the first place? It’s unnatural to give birth and then never touch or hold or even see the baby for hours after that. It feels wrong for my baby to go through painful procedures without me there with him to comfort him. I show up and he’s suddenly got an IV or he’s had a vaccination, etc. and I wasn’t there to hold him when he cried. It’s completely unnatural to ask a stranger if I can please hold my baby or change his diaper or feed him. I’m his mother. I should be the one giving permission to others if they want to handle my baby. Nora still hasn’t even met Callum and Josh has seen him for maybe a couple hours in the past two weeks. All of this feels off but thank goodness it is temporary. Part of me feels incredibly privileged to even have a baby in the NICU. The one and only dream I ever had of Lucy after she died was of her in the NICU. I was going to visit her and I walked into the hospital, up the elevator to the next floor and down a long hallway to my baby Lucy’s crib. She was so sweet with chubby cheeks and brown hair and oh, I loved her so much. I was so happy to be with her in that sunny little room. Then I woke up to my nightmare…swollen, milk filled breasts and empty arms and a permanently mutilated heart. I was gutted. I begged God not to ever, ever let me dream about her again because I couldn’t stand waking up to my life. I will just wait until heaven. Thankfully He heard my pleas and hasn’t ever given me a dream about Lucy again. It would be too painful. But after I had that dream I struggled any time I heard a NICU mom complain about her living baby who was still in the NICU. I envied her. Now I get to be one of those moms with a living baby in the NICU and I am so, so grateful (and yes, I still complain about the hard stuff.) Even though it is inconvenient, it is stressful, it is exhausting and it feels unnatural, I know we are very blessed to be in this situation. Do you know what is truly unnatural? A mama saying goodbye to her baby for good. A mama living the rest of her life without her child.

So, yes, it is hard and we are exhausted but we are so thankful.

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Please continue to pray for our baby Callum to get over whatever is hurting his belly, to get better at his feedings and for his blood levels to normalize. We appreciate all of you so much!

IUT #3


Baby boy is still doing great and handled his third IUT like a pro. My third IUT was a little bit more dramatic than the others but in the end everything was fine. We found out that I did develop a second antibody and it’s called anti-Kidd (jkb) antibody. This makes it more difficult to find blood for me since they now have to match donor blood with both of these antibodies. The blood bank worked all last weekend trying to find donor blood that matched mine and finally called Dr Trevett the night before the transfusion to tell him they got it! Well, the next morning I arrived at 5:30 am for the IUT and started getting ready for the procedure. Here I am with my GIANT belly at 32 weeks and 2 days:

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Dr Trevett came in with a really frustrated look on his face. He said after all that work to find the right blood, the courier had forgotten to drive it to the hospital so there was no blood for the baby. This meant that we would miss our 7:00 time slot in the operating room. The courier was doing his best to get the blood to the hospital so all we could do was wait. There is a 24 hour time limit for when you can safely use the donor blood after collecting it, so the clock was ticking. It was stressful to wait and not know if the blood would get there in time. The hours leading up to an IUT are difficult anyway because it is a somewhat dangerous procedure and I never know how it’s going to go. Since I had a bad experience with my very first IUT ever in Alabama, it is often hard to feel hopeful. I never felt Lucy move again after her IUT and the doctors would not scan her again for a week. Lots of fears go through my mind before every IUT. Is baby’s heart rate going to plummet when they stick the needle into the cord? Is he going to develop a blood clot? Will they have to do an emergency c-section in the middle of the procedure? Would they get him out in time? There are so many what-ifs so it was difficult to have added stress during that time. I got a sweet text from another mom who has been through several IUTS who I helped through her own kell pregnancy. She shared a verse with me and encouraged me. I knew many of you were praying for us and that gave me strength. We finally were told that the blood had arrived and we had an OR room booked for 12:00. The hours ticked by and finally a little after 12:00 Dr Trevett walked in looking super frustrated again (poor guy had a long day!) He said there had been two emergency crash c-sections and we now did not have an operating room available but the 24 hour window to use the donor blood was about to close. Our only safe option was to do the IUT in an ultrasound room, which would mean I couldn’t have the sedative/pain medication for the procedure since we weren’t in the OR. It also meant if baby went into distress they couldn’t deliver right there, they would have to move me up to a different floor to an operating room before getting the baby out. The other choice was to let the blood expire while we waited for an OR to open up, then the blood bank would have to search for more donor blood that matched my antibodies. It could take days to get the blood and in the meantime baby would be getting more and more anemic, which would obviously be very dangerous. I agreed with Dr Trevett that we just needed to go ahead with the procedure in the ultrasound room so baby could get the blood he needed.

I really struggled with my anxiety at that point but two verses came to mind that helped. The verse my friend had shared with me earlier that day:

Do not be anxious about anything but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:6,7

And this simple verse that I love:

For He Himself is our peace. Ephesians 2:14

I made a conscious effort not to focus on the fear or the list of things that could go wrong and instead to find things I was thankful for. “Thank you Lord that I’m not in Houston trying to get an intrauterine blood transfusion in the middle of a disaster. Thank you for Dr Trevett and his patience, his kindness and his competence. Thank you for getting my son all the way to 32 weeks alive. Thank you for another chance to trust you in a difficult situation.” These small offerings of thanks brought me great comfort. I also thought of the other verse I mentioned, “He Himself is our peace. He is my peace. He’s bigger than the situation and the fear and the risks. He is my peace and He’s right here with me.” These thoughts calmed me, although they didn’t calm the contractions that started coming more frequently as I was moved into the ultrasound room for the procedure. The contractions kept coming throughout the procedure, which was really annoying and painful (having a long needle going through your uterus during a contraction is not something you want to feel.) Thankfully Dr Trevett and Dr Gomez, who was assisting, were very careful and patient working to get the blood into baby’s umbilical vein through all the contractions. Baby’s starting hematocrit was 24 and ending hematocrit was about 43. Baby handled the procedure well. Dr Trevett decided that he didn’t want to risk going in a second time to do the IPT (put extra blood into baby’s belly) since I was having regular contractions. I was thankful again for his caution and unwillingness to take extra risks when it isn’t absolutely necessary.

After the IUT, Dr Trevett wanted to monitor the baby and me for several hours and my contractions got closer together, although they weren’t changing my cervix at all or starting actual preterm labor. Dr Trevett had me stay overnight and they monitored baby’s heartbeat and my contractions all night long just to be safe. Since Josh had to work and couldn’t be there, my mom and Nora had come with me to Atlanta for the IUT. Nora brought so much joy to my hospital room while we passed the time on the monitor.

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Love pats for baby brother.

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And here’s Nora laughing at nothing:

The baby looked good all night long and my contractions eventually subsided so we were discharged from the hospital in the morning. Since Dr Trevett didn’t do the IPT we can only wait about two weeks until the next IUT and we will probably have to deliver a week earlier than we hoped. The next (and last!) IUT will be Tuesday, September 12th when I am 34 weeks and 3 days. Then, depending on how that IUT goes we will deliver two or three weeks after that at 36/37 weeks. I cannot wait to meet my son!

I had my appointment with the MFMs at UAB Hospital this past week and to be honest, I left feeling very discouraged and depressed. I’m feeling a bit better now and I’m working on the blog post to share how it went with everybody so hopefully I can post that soon. We appreciate all of your prayers and encouragement. They mean more than you know!