Today a Facebook memory popped up from seven years ago:
I still can’t believe Nora is here sometimes. The wait between Lucy and Nora felt excruciatingly long, probably because at the time I had no idea if there ever would be a Nora. But it was a terrible two and a half years of grief, fear, uncertainty and deep longing for more children, not to mention the two early miscarriages and adoption loss.
I looked back at my journal from that year and read today’s entry, November 29th 2013:
So today, from my view here in 2023 I just want to acknowledge the beautiful ways that God answered my prayers from 2013. Whether those prayers were whispered or begged or sobbed I don’t really remember, but I do know they came from a truly broken heart.
“Oh Lord, come and satisfy my desire in this scorched place and make my bones strong. Lord, please come and strengthen me. Give me endurance and patience.”
My God heard me. Every single prayer was gathered and acknowledged and answered. As I mentioned in my Facebook post from 2016, Psalm 10:17 says that God inclines His ear, He hears the desire of the afflicted and strengthens their heart. He did strengthen me and give me the endurance to get through those years.
And as I wrote in my journal ten years ago: Isaiah 58:11 And the Lord will guide you continually and satisfy your desire in scorched places and make your bones strong; and you shall be like a watered garden, like a spring of water, whose waters do not fail.
Over the past ten years God has continued to guide me and satisfy my desires and strengthen me. I give Him all the praise, all the love and gratitude. Thank you, God, for the beautiful ways you have answered my prayers and brought me from a place of loss and grief to hope and life, like a watered garden, like a spring of water whose waters do not fail.
Once again the days between my blog posts have stretched out to weeks and now months. I remember when I first started this blog in 2013 I was in such agony, it felt almost blasphemous to include the word hope in the title. I didn’t know it at the time, but I was caught in the “this is how I will always feel” vortex that comes with profound grief. So much trauma from the past and fear for the future. It took a great leap of faith to tack on the “and Finding Hope” to “Losing Lucy” when I created this blog.
Now, as we head towards the end of 2022, I look around and realize I’m here, in the hope and the light that I was scared to even dream of in 2013. For the first time in a decade Josh and I aren’t gearing up for another stressful pregnancy. We are flipping the “Fight or Flight” switch and we are now in recovery mode.
I have weekly EMDR treatments and counseling sessions to work through the trauma of my four alloimmunized pregnancies. I finally feel like I’m emerging from the shadows of perinatal and postpartum depression, anxiety and OCD that took hold during my last pregnancy.
Our family is complete and our children are healthy and growing. Liam is 13, Asher is 11, both in middle school and handling it quite well, actually.
Lucy would be 9 if she were here. Her absence can be deafening some days. Nora is 7 and loving the first grade and gymnastics.
Callum is in pre-K and just turned 5. Our baby August is 2, not so much a baby anymore. My only blue eyed, dimpled boy.
The Allo Hope Foundation, which I started in 2019, is thriving and growing in ways I never could have imagined. Providers and patients have stepped up to help support our cause, generously giving back in order to protect families from this devastating disease. I’m hopeful that new, safer treatments are on the horizon. My gratitude literally has me in tears as I type this. The way the community has rallied around our patient community the past few years has surpassed all of my hopes, and there’s so much more to come. I remember how isolated I felt when I first received my diagnosis of red cell antibodies. I felt powerless to protect my baby, unable to make my own reproductive decisions, confused by this complex disease, dismissed because my condition was rare. But here in 2022, heading into 2023, I feel empowered, educated, and supported- the way I want every woman with maternal alloimmunization to feel.
On that note, I want to share some of my favorite resources we now have for patients, providers and loved ones dealing with maternal alloimmunization and HDFN over at the Allo Hope Foundation.
Letter to Providers
To help alleviate some of the burden on patients, we created this letter to providers that includes an overview of basic treatment protocols for alloimmunized pregnancies. This has been reviewed and signed by the AHF Staff and Medical Advisory Board. It has sources cited and QR codes that doctors can use to get quick access to more of our resources.
The Allo Podcast The Allo Podcast brings you into the complex world of maternal red blood cell alloimmunization and Hemolytic Disease of the Fetus and Newborn (HDFN.) We share real life patient experiences, valuable insights for providers and care teams, and easy to understand monitoring and treatment information. We empower you to advocate for the best possible care, and we have a great time doing it.
On this day nine years ago our baby’s heart stopped as we helplessly watched on ultrasound. It was by far the worst day of my life. A day that broke me to my core and divided my life into before and after.
Of all the days of my life so far, I have thought about February 8th the most. That day is buried deep inside me. Malignant. Permanent. I wish I could root it out and erase it forever. But despite the trauma and pain I felt on February 8th, 2013, there is this one part that I could never erase, even if I was given the choice. God’s presence. I have never felt the presence of God in my life like I did that day. He was there with me, standing in the room next to Josh. The doctors, nurses and family members came in and out but He never left. He was a physical presence in the room, holding me up and carrying me. And He repeated the same phrase to me over and over again, an audible voice in my head. I WILL REDEEM IT. The greatest loss of my life. My irreplaceable baby girl had been taken from me. And yet God promised me that He would redeem the loss. It felt impossible. But when He spoke the words to me again and again as I labored and birthed my lifeless girl, I knew He was speaking the truth. I trusted that He would fulfill His promise to me.
After we got home from the hospital I looked up the meaning of “redeem” and it means “to free from what distresses or harms, to change for the better, repair, restore, to exchange for something of value, to make good, to atone for, to make worthwhile.”
That is a big promise. Today, nine years later, these questions keep coming to mind-
Has He redeemed it like He said He would?
Did He keep His promise?
The answer is no and yes. During the last nine years God had redeemed far more than I ever thought possible. He has not restored Lucy to me, but many other “permanent” losses have been restored to me. God is keeping His promise and I know He will fulfill it completely once I get to heaven. So today, on Lucy’s ninth birthday I wanted to list nine things that God has redeemed since that day in 2013 when Lucy died.
My dream of having a daughter on earth
My pregnancy and childbirth experience
Our dream of having a large family
Our trust in doctors and the medical community
My ability to advocate for what is right, even if it goes against the cultural norm
My breastfeeding experience
My ability to speak up for and protect my children
My ability to celebrate and cherish other women’s pregnancies/babies
Inner joy and peace
His gifts abound day after day. Even though God has done far more than we ever could have imagined, we still ache for the one thing He has not yet redeemed, our Lucy Dair. Our grief is palpable today as we remember our daughter and wonder who she would be at age nine. We remember how she was neglected by the medical team we entrusted her to. We work through forgiveness again and again. We ask God to restore what has been taken from us, and we wait for Him to fulfill His promise. And if I quiet myself and close my eyes I can feel His presence here with me in my grief. He still hasn’t left.
Isaiah 43:1-2 Fear not, for I have redeemed you; I have called you by name, you are mine. When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through the fire you shall not be burned, and the flame shall not consume you.
It has been a while since I have updated the blog! Life with five kids is super busy, as you can imagine. I wanted to give everyone a quick update on our family and The Allo Hope Foundation.
Our baby August is now ten months old and is thriving! He is meeting all of his milestones on time- crawling everywhere, eating everything, pulling up and climbing furniture and babbling. He is such a sweet, happy baby. August is completely done with HDFN and has no lasting effects from his battle with anti-Kell antibodies. I will write a blog post soon with more details about his treatment for HDFN after he was discharged from the hospital. Here are some recent pictures of our baby August!
Callum is now three years old and will start preschool in the fall. He loves letters and numbers, cars, trains, and his siblings. He is a sweet big brother to August. Nora is now five, about to turn six, and will be starting kindergarten in the fall. She is still very maternal, taking care of all four of her brothers, even when they don’t need her help. Liam and Asher are now twelve and ten years old and are super independent and fun to be with. We feel so incredibly blessed to have five living, healthy children. We never thought we would actually be able to complete our family, but we are definitely finished having babies. Josh had a vasectomy last month so we will never have to face another high risk pregnancy. VERY glad to be done!
The Allo Hope Foundation is the nonprofit organization that I started in 2019 to help educate and support families who are facing maternal alloimmunization and HDFN. We have a ton of resources available on our website www.allohopefoundation.org and we have a support group on Facebook called Support for Antibodies in Pregnancy. If you have been diagnosed with red cell antibodies during pregnancy, come and join our group on Facebook where you can meet other women who have experienced an alloimmunized pregnancy. We also recently created educational booklets for patients with antibodies. We have a prenatal booklet for pregnant women with antibodies and a post birth booklet for parents of babies with HDFN.
If you would like a booklet, just fill out this form and I am happy to send you one free of charge! Another project we are super excited about is the Alloimmunization/HDFN research platform at AllStripes. Patients can sign up for free at www.allstripes.com
As always, I’m happy to answer any questions about HDFN and antibodies in pregnancy. Just leave me a comment here or you can email me at bethany@allohopefoundation.org
On this day eight years ago we went in for our second intrauterine blood transfusion with our baby Lucy. Her first IUT went perfectly according to my MFMs. It was performed a little over a week earlier at 18 weeks gestation. But it didn’t really go perfectly, we know that now.
A few days ago I was reading over my medical records and the details break my heart. During the first IUT they discovered that Lucy’s hematocrit was only 6, which meant she was incredibly anemic. The doctors put donor blood into the cord and it went into the umbilical vein as they hoped. It is very hard to guide a needle through a woman’s uterus and into the baby’s umbilical vein, especially on a baby as tiny as Lucy. The procedure is much easier and safer when performed at later gestations. But that day during the first IUT, the MFMs were successful and hit the cord as planned.
I often wonder, what would have happened if the doctors had stopped then and performed another IUT two days later. That’s probably what Dr. Moise and Dr. Trevett would have done. Instead, my doctors injected Lucy with Lasix (this is something I never noticed in my medical records before now) and they went in with a second needle through my uterus into her abdomen. She had ascites (fluid building up) which was the beginning of fetal hydrops. The doctors injected more blood into the ascitic fluid in her abdomen, which would never get absorbed and would only further bloat her little body. Instead of following up and checking on Lucy in the days after the IUT, our doctors refused to check her anemia levels or do another IUT. They gave up on her well before she was dead.
And so, on this day in 2013, Josh and I went into the hospital in Birmingham and as they got me prepped for the second IUT, we watched on the ultrasound as Lucy’s heart gradually slowed down and stopped. I don’t know if there is any trauma quite like watching your own child’s heart slow down and stop beating. Lots of therapy, EMDR sessions and years of anti-anxiety meds later and I am still deeply traumatized by what happened on that day and the days leading up to and following her death.
Now, we have three living reminders of what my outcome with Lucy could have been with the right monitoring and the right treatment…a healthy daughter who would be turning eight this year. Her three younger siblings, Nora, Callum and August will get to celebrate healthy milestones and birthday parties this year. Lucy will not.
Callum, Nora and August
And so, on this eighth year after losing my daughter to HDFN, I will work hard to process my grief and forgive the doctors again for their carelessness and I will decide not to hold on to bitterness. There is so much freedom in choosing forgiveness over bitterness. I will continue trusting God with my life story and the lives of my children, even thought He let Lucy die. I will keep turning to Him for my peace, my joy and my purpose. I will celebrate the goodness that has come from Lucy’s life- the many babies who are alive today because of her, the realness of heaven and the joy I have set before me as I walk towards my real home, and the great work we have been able to accomplish so far through The Allo Hope Foundation.
We love you so much, Lucy Dair. Eight years closer to having you for eternity.
Lucy Dair Weathersby
In other news, our baby August is doing well and is already five months old. He brings us so much joy, especially on hard days like this.
Our sweet boy, August Judah Weathersby, arrived almost two weeks ago and every day since then we have fallen more in love with our boy. August was born at 37 weeks and 1 day, which is incredible considering the circumstances. He weighed 8lbs 1oz and was 21 inches long.
This was my second c-section and it was different in a lot of ways from my last c-section. Callum’s delivery was completely unexpected and urgent (he was going into distress so we had to deliver as quickly as possible) but this one was planned. Josh wasn’t able to make it to Atlanta in time for Callum’s birth so I was alone for the c-section, but this time Josh was with me the whole time. We drove up to Atlanta the night before and ordered food from our favorite Thai restaurant. Then we snuggled on the couch in our hotel while eating dinner and watching a movie. We were buzzing with excitement and disbelief that we had actually made it this far, things had gone smoothly and our baby was still alive and ready to meet us the next morning.
During the c-section, Dr. Trevett was able to join us, which was so special. He wasn’t actually doing the procedure (my OBGYN, Dr. Howard performed the c-section) but he was able to stand right next to me and be there for the delivery. Right after August was born we couldn’t see him yet but we could hear him crying and I was desperate to get a glimpse of him. I think he was grunting so they had to work on him a bit to make sure he wasn’t having trouble breathing. Dr. Trevett told us, “He looks really good, he’s big! And he has a lot of hair! It looks blond!” It was fun to have him narrate when we couldn’t see August yet. They finally brought August to us and he was so beautiful and pink and chubby. He looked like a normal full term healthy baby, not a baby who had just fought for his life for 8 months. We were so in love. I told Dr. Trevett, “He’s only here because of you.” And he laughed and said, “Well, you guys had a lot to do with it too.” The c-section went great and felt like it took 10 minutes and then I was taken to recovery. August was taken to the transition nursery for observation since he was still grunting. They wanted to do blood tests and make sure he was breathing well. After observation and testing they would decide if he needed to go to the NICU or if he could come to my room and stay with us.
Once we were taken to our hospital room everything was suddenly still and quiet and Josh and I were alone. We were so overjoyed that our son was here and he was safe. We had a few pictures of August from the operating room that we looked through over and over again and discussed. Who does he look like? I wonder what his hair looks like under that hat? I thought he would weigh more, what about you? As the minutes and then the hours ticked by I became more and more upset that we couldn’t see August. I remember after Callum was born I was not allowed to go see him for 12 hours after the c-section. That is the hospital policy for all women who have c-sections- no getting out of bed for 12 hours. This isn’t a big deal for the families who have healthy babies because the babies are in the room with them, but for the families whose babies are whisked away for observation or admittance to the NICU, this can feel excruciating. For me, the 12 hours after Callum was born were by far the hardest of his entire 20 day NICU stay. There is a deep primal need to have your baby with you after birth, to have him tucked up safely under your chin on your chest. The ache feels almost physical when you give birth and then there is no baby in sight, no skin to skin contact, no newborn smell. My pain might be more intense because of the trauma we experienced with Lucy, but I’m not so sure. I have a suspicion that the ache is just as deep even for mothers who haven’t lost babies.
Josh was wonderful and called the transition nursery over and over again for an update on August, and asked how much longer until we could see him. They told us his blood sugar was low, his hematocrit was great (39), so he wasn’t anemic, but his bilirubin was a bit high (4). They put him under phototherapy lights to bring his bilirubin down and they told us as soon as they were sure that he was breathing well they would try to send him to the well baby nursery on our floor. We were both relieved that he was doing so well, but I started to feel panicky looking around our empty hospital room. It brought me back to the hospital room we stayed in after Lucy died. No bassinet, no baby, just a heartbreaking empty silence. Josh decided to go get our bags and pillows from the car and once I was alone I allowed myself to cry. Part of me felt like I didn’t deserve to cry because my baby was alive and well, and so many other women’s babies weren’t alive. But I could not contain my tears, I sobbed and sobbed, aching for my baby August who I hadn’t even held yet. A nurse came in and saw that I was crying in my bed and I felt ridiculous, but she was so kind and compassionate. She went and talked to the head nurse who also came in and asked if there was anything they could do to help. I said the only thing I wanted was my baby and I understood that they couldn’t do anything to change hospital policy. They tried reassuring me that he would be fine and I clarified that I wasn’t worried about him at all, I just needed my baby with me. I told them that I had struggled in the past with PTSD after losing my daughter and this felt like PTSD (mixed with some intense hormones I’m sure.) Josh was also really sweet and affectionate and kept calling to check on August. After 8 hours of waiting we finally looked up and saw a nurse wheeling in a bassinet. You guys, we felt EUPHORIC when we realized it was him.
Josh got to hold him first and then I got to hold him on my chest and it was magical. He felt like God’s redemption in the flesh.
Josh and I cuddled with him and smelled him and savored every little detail we discovered. His dimples, his wavy blond hair, the cleft in his chin, his enormous feet and long toes, the way his little nose turns up, the birth mark on his forehead and eyelids (that all of our other babies had too.) It felt like such a gift to be able to soak him in and learn him and hear his little newborn sounds. His bilirubin was still a bit high so we had to keep him under the bili lights but we were so happy to be able to have him in the room with us.
The rest of our time in the hospital was spent enjoying our new son, getting his bilirubin under control, taking a million pictures and trying to get back into the rhythm of pumping and breastfeeding. Josh and I loved having this time together to bond with August without the stress of looking after our other four kids. Because of COVID restrictions, we weren’t allowed to have any visitors at the hospital. At first we were really sad about this because it meant that our parents, siblings and the kids couldn’t come meet August after he was born. But it turned out to be a really sweet time together in our hospital room, just the three of us cocooned in. Josh and I could talk for hours without being interrupted by the kids. We marveled in disbelief at August’s life.
I realized during this time together just how much I had missed with Callum. While he was in the NICU I didn’t feel like he was my baby. It felt like he belonged to the hospital and I didn’t have any ownership over him, like my parental rights hadn’t been granted to me yet. I had to ask them for permission to hold him, feed him, get him dressed. Now, since August wasn’t in the NICU and was in my room with me, he felt like he was mine. The nurses asked me if they could hold him, check his vitals, change his diaper. I was able to bond with him in a way that I couldn’t with Callum until I was home with him. I felt so thankful for this experience with August. It felt like another piece of my healing puzzle clicked into place. Another beautiful, undeserved gift from God.
After about 3 or 4 days under the lights, August’s bilirubin was low enough to stay off the lights. His hematocrit and hemoglobin stayed steady and the last time they checked, his hematocrit was 43. Dr. Trevett came twice to visit August and see how we were doing. As always I could not find the right words to express our gratitude for the amazing care he provided during my pregnancy. Not only did he manage an extremely risky alloimmunized pregnancy but he did so in the in the middle of a pandemic. Throughout my pregnancy he saw me every single week (sometimes twice a week), monitored August closely and helped me manage my fears and anxieties along the way. Dr. Trevett performed 7 intrauterine blood transfusions on August and got him all the way to 37 weeks safely. Thanks to him, August was born alive and healthy. We are so thankful for Dr. Trevett and all that he has done for our family.
We are also incredibly thankful for Dr. Moise who helped throughout my pregnancy as well, just from a distance. He checked in on a regular basis to see how the pregnancy was going and he was available any time Dr. Trevett or I had questions about my treatment. He was also ready to do any early IUTs if they had been needed.
August and I were discharged from the hospital together, which was a dream come true. No NICU stay, no leaving the hospital empty handed.
When we got home, the kids and my parents and even the neighbors were waiting outside in the yard, ready to meet baby August. The kids were so excited and relieved to finally see their baby brother in person, alive and healthy. We had warned them from the beginning that we didn’t know if he would survive and we didn’t know if we would get to bring him home or not. Just like we did during my pregnancies with Nora and Callum, we were very clear with the kids about what was happening inside my body and the risks that the baby was facing. We never gave them false hope or made promises that we weren’t sure we could keep. They prayed every night for God to protect their baby, which made it extra sweet when we finally got to see them meet their brother.
Over the past two weeks we have enjoyed our baby August so much. Seeing my five kids together feels so right, like a long aching desire fulfilled, like God’s promise kept in the most beautiful way. When I look at August I think about these verses from Isaiah 41-
17 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. 18 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. 19 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, 20 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.
Seven years ago we were told that we could never have any more biological children. And yet, in the desert wasteland of my womb God grew THREE healthy Kell positive babies. I hope when you look at our baby August you see what I see- a miracle that only the hand of the Lord could have performed. The Lord has done this, the Holy One of Israel has created this sweet baby and sustained him.
There is still so much more to write about but this blog post is already way longer than it should be so I will write more later. Thank you so much to every one of you who prayed for August and followed along during the pregnancy. We have been so encouraged by all of the support and kindness you have shown us.
Our seventh and last IUT is done and now we have less than a week until we meet our son! The IUT was performed at 35 weeks and 4 days and it went well. Thankfully the baby was in a great position for the procedure. His beginning hematocrit was 32 and ending hematocrit was 44. I feel so incredibly relieved that I never have to go through another IUT again in my life. Here are a few pictures from IUT #7:
I am now taking Phenobarbital three times per day for ten days to develop the baby’s liver. This helps him handle the high bilirubin after he is born, and will lower his chances of needing an exchange transfusion. We are also hoping that it will shorten his NICU time. Once I am finished with the ten day course of Phenobarbital I have a repeat c-section scheduled for Monday, August 24th. I keep hoping that there is some way for me to have a VBAC but my doctors do not feel safe inducing and attempting a VBAC since there is a higher chance of uterine rupture. The baby has to be born between 37-38 weeks so they have no choice but to induce or do a c-section. I want to do whatever is safest for the baby so we are going ahead with the c-section unless I miraculously go into labor on my own before then. This is my 6th pregnancy and despite daily contractions and dilating to 1-2 cm weeks before the due date with all of my pregnancies besides Lucy’s, I have never gone into labor on my own. I don’t think it’s going to happen.
We are counting down the days until we meet our boy next week! Please pray that everything goes well, that the baby and I are safe and healthy and that we are ready for the baby by Monday. We just recently started preparing our home for the baby’s arrival since we didn’t know if he would survive or not, so now there’s a mad rush to get everything ready for him. Thank you to everyone who has followed along with our journey and encouraged us over the years. I will update after the baby is born!
IUT number 6 went great and the baby handled the procedure really well. We were surprised to find out that he wasn’t actually very anemic at all. His beginning hematocrit was 35 and Dr. Trevett brought it up to 45.
Watching baby’s heart strip after the IUT
The baby’s 7th and last IUT will be tomorrow, August 13th, when I am 35 weeks and 4 days pregnant. At 35+1 the baby’s estimated weight was 7lbs 3oz so he is still measuring several weeks ahead. During his last ultrasound a few days ago Dr. Trevett noticed that he was in a bad position for the IUT. His bottom/back was pressed up against the cord insertion again, which would make the IUT much harder. We are hoping the baby moves into a better position by tomorrow so that Dr. Trevett can perform the IUT safely. If anything looks risky or difficult tomorrow, Dr. Trevett probably will not go ahead with the IUT and we will deliver by c-section instead. We are really hoping to have a successful IUT so that baby gets a little more time to grow and develop before birth. I will also be taking phenobarbital the last ten days before delivery in order to develop the baby’s liver and lower his chances of hyperbilirubinemia after birth. I was able to take phenobarbital before Nora was born and she had no bilirubin issues at all. Callum was born by emergency c-section at 34 weeks before I could take the phenobarbital and he struggled with high bilirubin for several days. Please pray that the IUT goes well tomorrow and that the baby is born safely at just the right time, whenever that is.Â
A few recent pictures of the baby and the belly:
Thanks so much for all of your prayer and support. We are almost there!Â
These guys are so ready to meet their new brother!
Our baby boy is still doing well and growing like crazy. I am 33 weeks exactly today and I feel so thankful to have made it this far with a healthy baby. Our fourth IUT was performed at 29 weeks and 4 days. Baby boy’s estimated weight was 4lbs 3oz. His beginning hematocrit was 25 and ending hematocrit was 42. Everything went smoothly and baby handled the procedure well.
Our fifth IUT was performed two weeks later at 31 weeks and 4 days. Baby weighed 5lbs and 8oz. This time the procedure was much more difficult for Dr. Trevett because of the baby’s position. Somehow he had his back/bottom pressed up against the umbilical cord insertion. The cord was being squeezed by the baby which meant the space the needle had to go into was much smaller than usual. Dr. Trevett and the rest of the team tried everything they could think of to get the baby to move but he wouldn’t budge. They tried tilting the operating table to the left, then to the right. They tried using their hands to manually move the baby and then they tried a buzzer that vibrates and has a loud sound to try and surprise the baby. None of it worked. Dr. Trevett discussed possibly delaying/rescheduling the procedure but we all really wanted to get it over with that day. After several tries, Dr. Trevett was able to get the needle into the squished umbilical cord and the IUT was a success. The baby handled everything surprisingly well. His beginning hematocrit was 28 and ending hematocrit was 42. Here are a few pictures from the last IUT. You can see the needle marks on my belly from multiple attempts into the cord. Usually there are only two tiny scabs left from the needle after an IUT.
On July 19th our Nora Juliet turned five years old! She was able to have a small birthday party with her family and a couple of her good friends. We did it at a nearby lake and stayed outside the whole time to try to lessen our chances of contracting/spreading COVID. It was so hot that the icing started melting and sliding off of her cake, but she didn’t care. She was so excited to be able to swim and play with her friends and have a party. I always think of Dr. Moise on Nora’s birthday (as well as many other moments throughout the year) and feel so thankful for him and the gift he gave to our family. I also praise God for the gift of Nora’s life. We have been blessed beyond comprehension to have Nora here with us for the past five years. She is full of personality and she is so different from her brothers. When I was buying the princess decorations for her party I cried with joy and gratitude because I GOT TO PLAN MY DAUGHTER’S PRINCESS PARTY. I still can’t believe that she survived. I remember fantasizing about having a living daughter and the dream seemed so impossible. Now, every pink item of clothing, every Polly Pocket, every Barbie and baby doll and princess dress in our home feels like a miracle. We are loving every minute of it.
We also were able to squeeze in a family vacation between my doctor’s appointments last week. We stayed in a little cabin in the the Smoky Mountains and got to spend time with my parents and my two brothers and their families. It was so much fun to finally be out of our house. We have been social distancing since March so the kids thought it was incredibly exciting to be in a different environment.
Please continue praying for our smallest boy as he still has two more IUTs left before delivery. The goal is to transfuse at 33+3 and again at 35+3 and then deliver two weeks later. We are really hoping the baby needs very little NICU time since Josh and I won’t be able to visit him much while he’s in there due to COVID restrictions. It hurts my heart thinking that I might only get to see him for a few short hours per day while he’s in the NICU. Nora was born at 38 weeks and was only in the NICU for about 12 hours of observation and then was discharged with me two days later. Callum was born at 34+4 and was in the NICU for almost 3 weeks dealing with anemia, hyperbilirubinemia and preemie issues. The further we can get before delivery, the better. I will update everybody after our next IUT this coming week!
As I continue navigating my way through this high risk pregnancy, which is my fourth Kell sensitized pregnancy, I am learning so many things along the way. I could share about the truths this baby is teaching me about hardship, perseverance and faith but for this blog post I wanted to just list some of the important medical information that I want to remember later. I’m afraid if I don’t write about these details I might forget them and these are very important take aways for other families dealing with alloimmunized pregnancies. So here are the things I am learning and re-learning during this pregnancy that I want you to know if you are facing an alloimmunized pregnancy as well.
If you have a critical titer you need weekly MCA scans to monitor the baby for fetal anemia.
Our babies can become anemic in the womb in just a matter of days. Fetal anemia can only be treated if you and your doctor know that the baby is anemic in the first place. The way to detect fetal anemia is by doing an MCA doppler scan, which measures how quickly the blood is flowing through your baby’s middle cerebral artery in the brain. These scans can be done as early as 15 weeks if the MFM has experience performing MCA scans. If you have a critical titer (4 and above for Kell, 16 and above for all other red cell antibodies) you should start weekly MCA scans by 16-18 weeks.
With this current pregnancy my baby had an MoM of 1.23 at 24 weeks. Six days later his MoM was 1.5 (some readings up to 1.56.) Since we were scanning weekly we were able to catch the anemia in time to treat it. They found matching donor blood, gave me steroids to develop baby’s lungs and then performed the IUT a couple days later. His beginning hematocrit was 25, so it was the perfect time to start IUTs.
If your MFM will not perform weekly MCA scans even though you have a critical titer, find an MFM who will. I drive to another state every week to have these scans done because the MFMs in my state will not provide the right care for my baby. It is worth the drive.
Timing of IUTs should not be based on MCA scans alone.
After IUTs start, MCA scans are not as accurate as they were before. Fetal blood flows differently than adult donor blood. Once IUTs start, the baby either has a mixture of fetal blood and adult donor blood or (eventually) has 100% adult donor blood. This means the MCA scans aren’t always as accurate at detecting fetal anemia. MFMs should base the timing of subsequent IUTs on the ending hematocrit from the previous IUT. Other factors can come into play like how the baby is looking on scans, what number IUT it is and whether your baby had an IPT (transfusion into the belly), IVT (transfusion into the umbilical vein) or both.
After my second IUT, Dr Trevett scheduled the next IUT for two weeks later based on the amount of blood they put into the baby and the ending hematocrit. He continued to scan the baby every week to make sure there were no signs of distress or extreme anemia. The week of the scheduled IUT, Dr Trevett performed an MCA scan and baby’s MoM was 1.39 which is clearly below the normal 1.5 cutoff for a blood transfusion. Thankfully he was not basing the timing of the IUT on the MCA scan alone so we went ahead with the procedure. During the IUT we learned that the baby’s hematocrit was surprisingly low- 20.9. I am so thankful that Dr Trevett knew how to time the IUTs and didn’t insist on waiting for a high MoM to do the next transfusion.
If your MFM has questions about IUTs and how to space them, share this article with him. It is written by Dr. Ken Moise and includes very thorough details on how to perform IUTs, when to start IUTs and how to space them out safely.
Subsequent IUTs can be performed as soon as 48 hours after the previous one if needed.
Sometimes a baby’s hematocrit is so low that multiple IUTs are needed to bring up the hematocrit safely. Did you know that the hematocrit should never be brought up higher than 3x the amount of the starting hematocrit? So, if a baby has a hematocrit of nine, the MFM should not bring the hematocrit higher than 27 in one procedure. Instead, they should transfuse only enough blood to bring the hematocrit to a safe level and then repeat the IUT procedure several days later. If needed, the IUT procedure can be repeated 48 hours after the first.
My daughter Lucy’s hematocrit at the beginning of her IUT was six, which is extremely low. My MFMs (at the time) transfused 20ccs of donor blood and then sent me home. They would not do another ultrasound until a week later. Their reasoning was that “IUTs can’t be done closer than a week apart anyway, so why check on the baby?” I believed them. Lucy never moved again after that IUT and died just over a week later. Â
With this baby the first IUT didn’t go exactly as planned. Dr Trevett had trouble getting the needle into the cord and the baby was extremely active. Despite giving a double dose of paralytic medication, the baby still did not stop moving. Baby eventually dislodged the needle when he bucked into it. Dr Trevett and Dr Gomez discussed what they should do and they decided to stop the procedure and do another IUT 48 hours later. The second IUT went smoothly and the baby was still anemic at the beginning of the procedure. We all felt relieved that the second attempt went well and the doctors were able to fill up baby’s blood supply.
IUTs should only be performed by MFMs with a lot of experience.
Intrauterine blood transfusions are actually very rarely needed by patients and MFMs do not perform them often. This means that few MFMs have adequate experience with this procedure. It isn’t an easy procedure to perform and the baby’s survival rate is much higher if the IUT is done by a practitioner with extensive knowledge of IUTs and experience doing the procedure. Before allowing your MFM to do an IUT on your baby ask them:
“How many IUTs do you perform on average per year?”
“What is your success rate?”
“What is the earliest IUT you have performed?”
“How will you determine how to space the timing of subsequent IUTs?”
“Will you temporarily paralyze the baby before the procedure?”
As mentioned before, I receive my prenatal care in a different state even though there is a large teaching hospital only an hour away with a fairly large MFM group. The MFMs at that hospital do not have adequate experience performing IUTs and they haven’t updated their protocols in years. It is so worth the drive to know my child is in good hands and has a high probability of surviving the IUT. Many women travel to other cities or states in order to have a more experienced MFM perform their IUTs. I love seeing MFMs who refer patients to other practitioners for IUTs or are willing to collaborate with other doctors for their patient’s care.Â
If you feel uneasy about your MFM’s ability to perform an IUT safely, it is always a good idea to get a second opinion. Feel free to email me if you would like a recommendation for a second opinion. My email address is bethanysk55@yahoo.com or you can always message me privately on Facebook (Bethany Weathersby)
If you have experienced an alloimmunized pregnancy or are experiencing one now, like I am, what have you learned along the way? I would love to learn from your experiences as well!
Losing Lucy and Finding Hope 