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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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.

 

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UAB MFMs and Isoimmunization

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 isoimmunization/alloimmunization.

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 isoimmunization 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 22-24 weeks even when the woman has a critical titer. This was their plan for Lucy, even though my Kell titer was 1,024 (critical titer is 8.) 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 way (besides doing an amniocentesis) 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 isoimmunized 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 protocols and treatment options 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.

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 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 the 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 1:1,024) 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 forced them to do) at 18 weeks.

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 isoimmunization 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.

You will need to find another MFM out of state to give you the proper care (since there are no other MFMs in the entire state of Alabama.) Dr. Trevett in Atlanta is amazing and so is Dr. 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 isoimmunization/alloimmunization.

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 isoimmunization during pregnancy and find an MFM who will treat your pregnancy with caution and expertise.

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.

Callum’s Birth Story

Isaiah 41:17-20 When the poor and needy seek water, and there is none, and their tongue is parched with thirst, I the Lord will answer them; I the God of Israel will not forsake them. I will open rivers on the bare heights, and fountains in the midst of the valleys. I will make the wilderness a pool of water, and the dry land springs of water. I will put in the wilderness the cedar, the acacia, the myrtle, and the olive. I will set in the desert the cypress, the plane and the pine together, that they may see and know, may consider and understand together, that the hand of the Lord has done this, the Holy One of Israel has created it.

A tree is just a tree unless it grows in a wasteland, then it becomes something quite miraculous; a sign of something greater, someone greater. I believe that every life is a miracle, but sometimes it takes an impossible situation to see the Hand behind it. My wasteland of a womb was supposed to be uninhabitable for human life, but Callum grew and flourished there in the desert. Let us all see and know, let us consider and understand together that the hand of the Lord has done this, the Holy One of Israel has created him.

Well, Callum’s birth story is not what I was expecting at all, but it’s not my birth story is it? It’s his birth story and he definitely made it his own. I was scheduled to have Callum’s fourth and last intrauterine blood transfusion on Wednesday, September 13th. This meant that I had to be at the hospital early on Monday the 11th to have my blood drawn. They always drew my blood a couple days before the IUT to make sure the donor blood matched my antibodies. I left at around 2 am that Monday morning for Atlanta and prayed that I would beat hurricane Irma there. Well, it was a tropical storm by that point but I still did not want to be caught in the storm on the interstate. I barely gave any thought to what I packed, expecting to only be there for three nights at the most. Oh, how I wish I had packed for a birth and for weeks of post partum life, breastfeeding and a long stay in the Ronald McDonald House! At least I grabbed Cal’s diaper bag at the last minute. I got to the hospital that morning and everything felt a bit weird and tense. All the schools were closed because of the storm and Dr. Trevett’s office was closing at 12:00. I was scared that the blood bank would have trouble getting the blood in time if the storm was really bad. I also worried that something would happen and Dr. Trevett wouldn’t be able to make it to the hospital Wednesday morning for the IUT.

Dr. Trevett did an ultrasound to check on Callum and he seemed really subdued compared to his normal active self. His MoM was 1.85 but Dr. Trevett didn’t see any signs of hydrops or distress. MCA scans aren’t usually accurate anyway after the second IUT because the baby’s blood is actually adult donor blood, which flows differently. Dr. Trevett thought Callum would be fine until the transfusion on Wednesday.

I drove to our friends’ house and you guys, there were no cars on the interstate, in Atlanta, in the middle of a weekday. I felt like I was on the Walking Dead. Super eerie. A couple hours after I arrived at their house the power went out and didn’t come back on for days.

I realized then that I hadn’t been feeling Callum move very much. Dr. Trevett had told me earlier that day that if Callum slowed down at all I should come in and they would keep me on the monitors until the IUT. I debated whether I should go in or not. I really didn’t want to get out on the roads in the storm so I checked Cal’s heartbeat with my doppler and it sounded normal. He was moving every now and then, but his movements were way more inconsistent and sluggish than usual. We played board games by candlelight and ate curry that night, which was fun, but I worried and monitored Callum’s movements, going back and forth about whether I should go in or not. It seemed like every time I decided to go in for monitoring, he would kick and I would change my mind. I was also having pretty regular contractions but ignored them since that is normal for me, especially in the third trimester.

That night I hardly slept because I barely felt my boy move. The next day my contractions picked up and I started timing them. They were coming consistently, every six minutes. I still didn’t go in because Callum was moving just enough to keep me from panicking and the contractions never got closer than six minutes apart. Wednesday morning I got up in the pitch black that is 4 am with no electricity and got ready in the darkness. I loaded the car up using my phone flashlight to see and drove to the hospital through the dark streets that were usually lit by street lights. Lots of trees and branches were down and traffic lights were out. The brightly lit hospital was such a relief when I got there. Dr. Trevett was there ready for the transfusion (he always made my heart feel steady) and the blood was being checked in. It was the one and only time I went in for an IUT all by myself. My husband Josh had to work and my mom was keeping Nora and my boys back in Alabama and I had insisted that I would be ok by myself.

I changed into the hospital gown and got hooked up to the monitors and waited for Dr. Trevett to get the OR ready for the procedure. The monitors picked up my contractions right away. I noticed pretty quickly that the baby’s heart rate seemed to be slowing down a lot after my contractions. After one especially big dip, the nurse came rushing in and told me to lay on my side while she paged Dr. Trevett. Her voice sounded urgent and he was there calling for an ultrasound before I knew it. They brought in a portable ultrasound machine and Dr. Trevett scanned Callum looking for signs of distress or hydrops. He said everything looked fine and Callum even passed the biophysical profile almost right away. Dr. Trevett decided to watch the baby’s heart rate for a few minutes and then he would decide what to do. He told me that the baby might have to be delivered if he was showing more signs of distress. I couldn’t believe they were seriously considering delivery. I was only 34 weeks and I was all alone and I just was not prepared to give birth right then. I woke Josh up with a text saying the baby MIGHT possibly be born that day and for him to start packing a bag just in case. Right then I had a hard contraction and as the contraction eased, Callum’s heart rate just plummeted. Dr. Trevett and the nurse both came running in and Dr. Trevett said the baby was coming out. He explained that Callum was definitely showing signs of distress and was telling us that he needed to be born as soon as possible. The IUT procedure does come with risks and it would be really unwise to do an IUT on a baby who was already in distress. If he did, chances were high that Callum would have to be delivered by crash c-section and would not be in good shape. I asked if I could be induced but he said that there was no way Callum would be able to handle the whole labor and delivery process if he wasn’t even handling these contractions well. Induction would also most likely end with a crash c-section. Thankfully my OB, Dr. Howard, was the doctor on call that morning so he was paged. I quickly got one last picture of my pregnant belly. My last bump picture ever.

The anesthesiologist was there before I knew it inserting my epidural. I felt REALLY floaty after that but still needed to send out a few texts to family and my best friend to let them know what was happening. It felt like my fingers were in wet cement and it felt like a tremendous effort to type out each letter. My texts were hilariously short and to the point. My friend Shelly was completely caught off guard by this text I sent her-


I was a little scared and I was really sad that Josh couldn’t be there for the birth (it’s about a four hour drive) but overall I felt a deep sense of peace and excitement going into that operating room. You know that Christmas Eve feeling from childhood when you know you are so close to opening your presents? That intense sense of anticipation and joy…that’s how I have felt right before each of my babies was born, besides Lucy of course. Even though Callum’s birth was very different from the births of my other four children, that magical sense of joy and excitement was still there. One of the nurses took pictures with my phone for me and the c-section was completely painless. I still was in shock that they were delivering my baby right then! They asked if I wanted to watch him being born (blood doesn’t bother me at all) and I said absolutely!

*WARNING- Semi-graphic pictures ahead*

They lowered the curtain between me and the doctors and then they pulled my miracle baby out and he was beautiful!

I was flooded with gratitude and relief to know my baby was alive and out of my body. Even though it was my body that had grown and nourished my son for months, it was also my own body that had worked so hard to destroy him. It felt amazing to finally get him out of there! It took a little while for Callum to cry but he finally did and it felt really unnatural for him to not be on my chest where I could comfort him. I couldn’t even see him.

They worked on him for a few minutes getting him stabilized, and they drew blood to see if he needed a blood transfusion. His apgars were 8 and 9 which was better than I had expected. He had some trouble breathing so they put him on a CPAP machine to help him breathe.

I finally got to see my son and he was perfect. Callum Joseph Thomas, born at 34 weeks 4 days, weighed 6lbs 6oz and was 18.5 inches long.

They whisked him off to the NICU and then I was alone with no baby and no husband, which was really weird. But the peace and the joy of having a living baby still lingered like a warm scent. They took me to the recovery area and that was kind of emotional for me. All the women who were brought to recovery had their babies with them and their husbands were there too. The babies cried and everyone congratulated each other and I laid there all alone in the corner wondering what was happening to my baby. A doctor came to update me on how Callum was doing. His hematocrit was 18, hemoglobin was 6 and cord bilirubin was 5. This meant that he was very anemic and his bilirubin was very high, which is what we were kind of expecting. They immediately put him on phototherapy lights, started an infusion of IVIG and started his blood transfusion. They were able to use the blood they had prepared for the IUT for Callum’s blood transfusion. I’m so glad the doctor took an aggressive approach treating Callum’s HDN (hemolytic disease of the newborn) because it prevented the need for an exchange transfusion and they were able to keep Callum’s bilirubin below brain damage levels.

Three of Dr. Trevett’s nurses came up to see me, which was so sweet and encouraging. They had all worked so hard to help get Callum here alive and I appreciate each one of them so much. They congratulated me and asked how he was doing. It was nice to finally have visitors and to be congratulated on my new baby like the other women in recovery (even if it wasn’t my husband or family members.) I cannot praise Georgia Perinatal Consultants enough for the amazing care they provided during my pregnancy. They went out of their way to make sure I was comfortable and Callum was safe. I often had to schedule ultrasounds last minute duringmy pregnancyand I was only willing to see Dr. Trevett but they always worked me in. If you are pregnant and dealing with isoimmunization and are in Georgia, Alabama or surrounding areas, I strongly recommend using Dr. Trevett at Georgia Perinatal Consultants. Anyway, I was finally taken to my room after that and I got settled in. The nurse told me that my epidural would stay in and I wasn’t allowed to eat or get out of bed for 12 hours post surgery. This meant that I wasn’t allowed to go see my new baby for 12 hours after birth. Of all the 19 days that Callum was in the NICU, those first 12 hours apart from him were by far the hardest emotionally. My whole being ached to hold him and be with him. It vaguely reminded me of when Lucy was born and she was taken away and I was left absolutely empty in that hospital bed. Except this time my heart was full of joy and gratitude and everyone who walked in the room congratulated me. Iknew my separation from Callum was temporary but I still ached for him. One of the nurses brought me a picture of Callum in the NICU and I clung to that picture and looked at it constantly. It was such a comfort to me.

Josh finally arrived and we tried to decide whether he should go see Callum in the NICU or wait until I could see him and both go meet him together. I really wanted to see the look on Josh’s face when he saw his son for the first time, but in the end he just couldn’t wait. He wanted to meet his boy and I wanted him to check on Callum so he went down to the NICU without me and met his son. I will always mourn the fact that I didn’t get to watch Josh meet his son for the first time. He came back to my room gushing about Callum and we marveled that our baby was here alive. I watched the clock and counted down the minutes until I was finally allowed to get out of bed and go see my baby boy. Josh wheeled me down to the NICU late that night and I finally got a closer look at my beautiful little Callum.

Despite being almost 6 weeks early and being hooked up to breathing support and lots of different monitors, IVIG, etc. Callum looked healthy and perfect and I was filled with awe. Over the following days our family members trickled in from Alabama, Tennessee and South Carolina to meet our miracle boy who they all had been praying for for months. Callum had three rounds of IVIG, two days on CPAP, several days of phototherapy lights, and two blood transfusions before being released from the NICU 19 days after he was born.

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Dr. Trevett holding his namesake on discharge day

 

We brought Callum home from the hospital on October 2nd, about three weeks before his due date. He had one more blood transfusion at about six weeks old and was released from hematology at two and a half months. He is perfectly healthy with no lingering effects from the antibodies that tried to kill him in the womb. His brothers and his sister are obsessed with him and he has brought so much joy to our family.

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In 2013 after we lost Lucy we went on to lose our two “rainbow babies” in early miscarriages; Jude in July and Pax in October. We named our third lost baby Pax because it meant “peace” and we were trusting God to fill us with peace even in our pain and devastation. I realized when I brought Callum home from Atlanta that in the end, I brought home my two living rainbow babies in July (Nora in 2015) and October (Callum in 2017), the same two months we lost Jude and Pax. I also realized that Callum’s name means “peace” just like Pax. God redeemed so much pain with these two miracle babies I got to bring home from the hospital. As I was finishing up this blog post today I decided to look back in my journal from October of 2013 when I lost my third baby in eight months and I found on that page, the exact verses that I started this blog post with, Isaiah 41:17-20. I praise God for writing such a remarkable story for my life and for using our pain and suffering to create something beautiful. I encourage those of you who are still waiting for your miracle and for your redemption not to give up hope. Keep clinging to hope, keep waiting in faith. God will give you the strength to continue and one day you will have your own story of healing and redemption to share with others.

Isaiah 40:31 Yet those who wait for the Lord will gain new strength; They will mount up with wings like eagles, they will run and not get tired, they will walk and not become weary.

Thank you, God, for our Callum Joseph Thomas and for the many amazing people who had a hand in bringing him here safely. He is our tangible reminder of your love and your faithfulness.

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All Clear

Well, we went in for Callum’s seventh blood transfusion on the Friday before Thanksgiving and ended up leaving the hospital without one! When we arrived that morning for the transfusion they inserted his IV and had his blood drawn to check his levels and we were happy to find out that his levels had gone up just a little bit on their own! His hematocrit and hemoglobin the Monday before had been 25.7 and 9.1 and on Friday they were 26.6 and 9.3. It was the first time in his life that he had brought his counts up without a blood transfusion so we were elated.

His hematologist checked his blood for my antibodies and it came back completely negative! I was surprised by how emotional I felt when he told me Callum’s antibody screen was negative. My baby was finally free from my dangerous antibodies for the first time in his life. He can now make his own blood and it won’t ever be destroyed by my antibodies again. It has been a long hard road to get my boy to safety. We did it! They removed his IV and sent us home without a transfusion.

We came back a few days later to check his counts one more time right before Thanksgiving and his numbers had BARELY gone up. His hemoglobin was the same (9.3) but his hematocrit had gone up from 26.6 to 27 so we were cleared to leave the state and visit family in South Carolina for Thanksgiving. We had such a great Thanksgiving with everybody. Callum’s Grandparents got to hold him for the first time and his SC aunts and uncles got to hold him for the first time without monitors and wires attached to him.

Yesterday I drove the hour to Children’s of Alabama for the last time to have Callum’s blood checked by the hematologist. His levels had gone up again on their own! His hematocrit was up from 27 to 28.4 and his hemoglobin was up from 9.3 to 9.6. We were officially released from hematology and we never have to check his counts again!! Thank you God, for this amazing gift.

Driving home from the hospital for the last time with my healthy boy in his car seat was redemptive and beautiful but bittersweet. This is how Lucy’s story should have ended. If she had been given the right monitoring and treatment like Nora and Callum, then I would have driven home one day in 2013 with my healthy baby girl in her car seat and our lives would have been completely different. Our family would be intact, our hearts would not be irreparably broken. Nora would grow up with a sister. Liam and Asher’s childhoods would not be marred by this tragedy. So many shoulds and woulds, and though I rejoiced that we were done, my grief noose tightened just a bit as I drove home with my healthy rainbow boy. But I also think about the other babies who might not be alive if it weren’t for Lucy and this blog. How many other lives would be devastated by tragedy if Lucy had lived? I’m reminded of a song I heard one day while driving to Atlanta for an ultrasound. It’s by Judah and the Lion and the lyrics bring me to tears every time I hear it.

And I’d take it all back, take it all back, take it all back just to have you.

Just typing the words makes me tear up. The words surge all the way down into this deep part of my soul, the part that still desperately wants to save my daughter. I think about the question, “Would I take it all back just to have my baby Lucy?” My mother heart would do anything to have my daughter back, to keep her alive. I would take it all back just to have her. But I also know that I couldn’t possibly make that choice knowing now what her life and her death have meant for other families. I am comforted knowing that God is in control of every little detail of my life and Lucy’s life and I don’t have to make these impossible, hypothetical decisions. But I still feel a deep ache knowing that Lucy’s story could have ended like Callum’s and the treatment that could have saved her was out there all along. Even with such angst in my heart about what happened to Lucy, I am flooded with relief and joy and gratitude knowing that Callum’s story will end differently.

Two Months and Still Fighting

Our baby Callum is two months old today! He is such a sweet boy. His favorite things are cuddling, sleeping in our arms, Mommy’s milk and Daddy’s voice. He really doesn’t like loud noises, lying flat on his back, bright lights and baths. He is smiling now and holding his head up (but still a little wobbly.) His siblings are obsessed with him (and his parents are too😉)

Callum is allergic to dairy, soy and wheat/gluten so I’ve cut all of those foods out of my diet so I can continue to breastfeed him. It’s a lot of work but definitely worth it. Callum is still fighting the anti-Kell antibodies that tried to kill him in the womb. We did blood work ten days ago and his hematocrit was 31. Today I was discouraged to find out that his numbers had dropped again. His hematocrit was 25 and hemoglobin was 9. His retic was 2 so we know that his body is trying to produce its own blood but the anti-Kell antibodies that remain in his system are destroying the new blood he makes. It’s hard to know when to transfuse and when to hold off on the transfusion. In utero Callum’s need for blood was being met by the transfusions Dr Trevett gave him. This sent the signal to his body that it didn’t need to keep producing red blood cells, so it stopped. Now we need his body to start making blood again but the only way to send that signal is to let him get anemic. We can’t let him get too anemic or he could suffer permanent damage to certain organs or could even die, but if we don’t let him get anemic enough his body will never get the signal that it is now responsible for producing red blood cells. Anyway, Callum has been looking a little pale and has been fussier than usual. Even though he is definitely anemic we are holding off on the transfusion and retesting his blood on Friday. In the meantime I’m supposed to monitor Callum closely and make sure he isn’t having trouble eating or breathing, and if he is I’m supposed to take him to the ER immediately. Whew, it is a lot. We are so sleep deprived because Callum has severe reflux (common with preemies) and he can’t ever lay flat to sleep. Even when he is slightly reclined he is uncomfortable, so that has been hard. I have a stack of birth announcements and thank you cards that still need to be sent out and my blog post about Cal’s birth story is only partially written. My house is an absolute disaster and my kids have had WAY too much screen time (I even let Nora get addicted to those mind numbing YouTube videos where people open Peppa Pig/Shopkins/Mickey Mouse/Paw Patrol toys and count gum balls.) But Callum’s needs are immediate so here I am on the couch holding him upright for an hour after I feed him and watching to make sure he is breathing ok. Everything else can wait.

Two things that are saving my sanity right now:

My Tula carrier that keeps Callum upright and leaves my hands free to do other fun things like dishes, cooking, laundry, two year old diaper changes, etc.

And our Owlet Smart Sock that monitors Callum’s heart rate and oxygen levels. An alarm will go off if his levels are too low or too high and all the info is sent to our phones so we can check his levels at any time.

This is one is too cute not to share. “Callum Weathersby is wiggling”

We have a lot of peace knowing that his heart rate and oxygen levels are constantly being tracked while he sleeps. We actually had heard about the Owlet sock long before Callum was born and really wanted one for him but couldn’t afford it. One day I came across a foundation called Knox Blocks which provides Owlet socks to families who can’t afford to buy them. I submitted a request for one and told them a brief recap of Callum’s story but didn’t really think anything would come of it. One day when Callum was still in the NICU I got an email from them telling me we had been chosen to receive an Owlet sock for Callum! We are so thankful for this gift, especially now while he is anemic. His oxygen levels and heart rate are good indicators of how his body is handling the anemia. I doubt I would sleep at all if it weren’t for this monitoring system. Thank you Knox Blocks, Palmer family and especially, baby Knox💙

Please continue to pray for Callum’s blood levels to normalize and for all of this to be over soon. Thank you!

P.S. I fell asleep several times while writing this so I apologize for any mistakes.

ISO Moms From Europe

I need your help! If you are from the UK, Germany, France, Italy or Spain and have had a pregnancy with HDFN (hemolytic disease of the fetus and newborn/isoimmunization) which included an intrauterine blood transfusion, you are needed for a research study. Your story could possibly help protect babies in the future and prevent other parents from going through what you went through (and you can make a little extra money while doing it.) A research study is being done on a new treatment for HDFN and they need women from Europe who are willing to do an hour long interview about their experience with antibodies during pregnancy. They will pay you $100 for your time. Here is a little more information about it from Ms. Benson-

We invite you to take part in a confidential 60 minute phone interview to discuss your experience with HDFN (Hemolytic Disease of the fetus and Newborn). We offer $100.00 for your time on the phone. We are working on behalf of a pharmaceutical manufacturer who is exploring the development of new treatment options to treat women affected by HDFN. The company is interested in understanding the experiences of mother’s affected by HDFN in order to help them better understand patient needs so they can work to develop the best treatment possible for this disease of high unmet need.

The central objective for these qualitative interviews is to explore the patient journey for patients with a history of HDFN including:

· How you received your diagnosis

· What types of treatments you received

· What types of treatments your baby received

· How HFDN has impacted your life

· Your thoughts on a new product in development to treat HDFN

bioStrategies Group is a consulting firm specializing in helping clients develop and commercialize innovative technologies to better serve patients, physicians and the healthcare system. Our clients include major pharmaceutical, diagnostic and biotechnology companies 

I did the interview already and it went great. The treatment sounds amazing. If you would like to participate please email me, Bethany Weathersby at bethanysk55@yahoo.com or Julie Benson at benson@biostrategies.com

Transfusion #6

Today is our baby Callum’s due date! It is hard to believe he is almost six weeks old on his due date.


Yesterday, Callum had his sixth blood transfusion (third post birth transfusion.) His hematocrit had held steady at about 29 the past few weeks but this week it suddenly dropped to 23. He wasn’t eating well and was more irritable than usual so his hematologist and I thought it was best to go ahead and transfuse. The doctors and nurses at Children’s of Alabama have been so wonderful, just like they were with Nora a couple years ago. They called IV therapy to insert Callum’s IV since he is so tiny and they hit his vein on the first try. They also had to double check his blood type since it had changed since birth. He was born O- because he was 100% donor blood at birth, but since then he has started making his own blood so yesterday when they tested him again, his blood type was O+. During the blood transfusion I was able to breastfeed Callum (some hospitals don’t allow baby to eat at all until the transfusion is finished) and I had a comfortable recliner to sit and hold him in the whole time. He handled it really well and slept in my arms or nursed throughout the transfusion. I think he was just happy to have a whole day of Mommy’s complete attention for once.

We will do blood work again in about two weeks to see how Callum is doing. They tested Callum’s blood yesterday to see if he still had some of my antibodies circulating in his system and he does, which means the new kell positive blood he is making now will be attacked by my antibodies. Hopefully soon he will be antibody free and he will be making all of his own blood with no further need for transfusions (like Nora.) Ok, I can barely keep my eyes open so I’m off to bed!