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.
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.
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.
A few recent pictures of the baby and the belly:
Thanks so much for all of your prayer and support. We are almost there!
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.
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.
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 email@example.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!
Well, our baby’s anemia escalated quicker than we expected. At 24 weeks the baby’s MoM was 1.23, which is a good number. Six days later his number had jumped to 1.5. A few readings were just below 1.5 and several were as high as 1.56. This is why it is so important to have weekly MCA scans if you have a critical titer. Many MFMs do MCA scans every two weeks, even for women with high or critical titers. Some MFMs say they will scan every two weeks and if the number goes up to 1.3 they will start scanning weekly. But fetal anemia can happen in a matter of days. I can’t imagine what would have happened if we were scanning every two weeks or waiting for a 1.3 to start scanning every week. My son might not be alive right now if we had. Women with antibodies, if you have a Kell titer of 4 or above or any other antibody with a titer of 16 or above, insist on weekly MCA scans. If your MFM won’t provide the weekly MCA scans, find an MFM who will. It is worth it. Always take the path of least regret.
Dr. Trevett performed our son’s first IUT at 25 weeks and 3 days. I was incredibly anxious and nervous imagining all the things that could go wrong and thinking through what would happen if baby had to be delivered at 25 weeks. I was focusing way too much on the fear and risks instead of focusing on God and leaning into Him for comfort. Time and time again I have seen the consequences in my life of not spending enough time reading my Bible and praying. When I don’t discipline myself and set aside time every day to spend with God I make selfish decisions, I live in fear and doubt and I miss out on so much abundance and peace that could be mine.
Anyway, I’ve been so busy that I haven’t been spending daily time with God and leading up to the first IUT I was an emotional mess. We also had COVID risks and restrictions, protests and a curfew in Atlanta that made things a bit more difficult logistically and emotionally. The day before the IUT I was having a lot of contractions, some spotting and decreased movement from the baby. Dr Trevett told me to go right to labor and delivery once we got to Atlanta. Once we were there the baby started moving more and contractions spaced out and basically disappeared. They watched baby closely and he looked fine on the monitors.
The next morning the IUT didn’t go quite as planned. They had trouble getting good access to the cord (possibly because of contractions and shifting of the cord placement.) The paralytic they gave the baby did not work and he continued to kick and move during the procedure. They gave him a second dose of paralytic and he still continued moving around. The anesthesiologist told me once I was in the OR that he had decided to just use a local anesthetic instead of an IV sedative for me, which immediately increased my anxiety. I asked him to please give me the sedative like we had discussed and he did, but it didn’t seem to take the edge off for me. I still felt completely awake and too aware of the procedure to relax. The baby finally bucked and knocked the needle out and Dr. Trevett decided to stop the procedure. Baby’s beginning hematocrit was 25 and it looked like they got 20 ccs of donor blood into the cord but they weren’t able to get an ending hematocrit because the baby was being so crazy.
The baby never slowed down or stopped moving, which is really not safe during an IUT. I was glad that Dr. Trevett and Dr. Gomez (who helps with all of my IUTs) decided to stop the procedure. They repeated the MCA scan the day after the IUT and the MoM was the same as it had been before the IUT which gave the impression that baby was still anemic. Dr. Trevett decided that he wanted to go in again 48 hours later and repeat the IUT. Selfishly, I was very disappointed that we had to do it again so soon but deep down I knew that was the safest choice for the baby. I called Dr. Moise and discussed the IUT with him and felt much better afterwards. He also thought it was a good idea to repeat the IUT 48 hours after the first.
For the third time in a week we drove the four hours to Atlanta (thank you Mom for watching all the kids for us last minute!) This time I knew I had to do a better job preparing mentally and emotionally for the IUT. I spent time reading my Bible, praying, listening to worship music, etc. I read an Instagram post from Kalley Heiligenthal whose two year old daughter, Olive, died earlier this year. The quote affected me deeply and filled me with courage and peace.
They say motherhood is having part of your heart walk around on the outside, in the elements, wild and open. In my case, part of me is out twirling here on this soil through Elsie and part of me is dancing in heaven through Olive. The day Olive left I sobbed, saying it was all worth it for the 2 years 1 month and 10 days I had her here. It’s worth every one of the million tears, worth the vulnerability, the pain. Loving her is worth it all. What I’d give for my freedoms to be limited again by her, for my body to stretch and swell carrying her, for my sleep to be stunted, another epic Olive breakfast hunger strike and a “you guys have to share with each other or mommy’s gonna go crazy” chat. For another snuggle, another “I yove you”, a belly tickle mid-diaper change. My heart on the outside. But I can’t grasp white knuckle to Elsie for fear of losing. I can’t give way to regret, I can’t control or manipulate and call it safety, I can’t measure my love or calculate my heart to avoid pain. I won’t, because that’s not love. That’s not living. It’s a slow death on earth. Love and fear refuse to coexist, so which one’s hand am I holding? Do it right and you’re at risk. What other choice do we have? That’s being a mother, that’s selflessness, that’s choosing to live fully alive, that’s giving our kids the example they deserve of how to do this life. Being a mom is one of the bravest things that can be done, irrevocably putting your heart on the line. Love is worth that, always. -Kalley Heiligenthal
Her words made me realize that I was trying to grasp white knuckle to this baby, to control and manipulate and call it safety. This baby is not Lucy, this situation is different and these doctors sure aren’t the same ones I had with my first Kell pregnancy. As I did with Nora and Callum, I have to make a conscious effort to remember that I am not in control, I have done my best to choose wise, competent doctors and I have advocated well for this baby. I don’t have to allow fear and trauma from my past rule my life. I can place this baby in God’s hands and trust Him to take care of us both.
The second IUT went much better than the first. Dr. Trevett and I both talked to the anesthesiologist about providing conscious sedation for me during the IUT and he did a great job during the procedure. I felt much more relaxed and at peace the second time. Dr. Trevett sedated and paralyzed the baby and he was completely still during the IUT. The beginning hematocrit was 29 and they got it up to about 45. The next IUT is this coming Friday, June 19.
I feel so thankful for Dr. Trevett and Dr. Moise and the whole team of doctors and nurses who are doing their best to help my baby survive. A week ago I had my last IVIG infusion and our whole family was sad to say goodbye to my home care nurse, Jennifer. Once IUTs start, there is basically no point in continuing the IVIG since the purpose of doing the infusions is to prevent/delay the need for IUTs. Jennifer came every week since my first trimester (sometimes twice a week) to administer my IVIG at home. She was so kind and patient with the kids and she was always an encouragement to me. She even gave us a gift card on her last day so we could buy some things for the baby. Jennifer is just one example of the many people working behind the scenes to keep our baby alive and healthy. These people usually get very little recognition for their contributions, but they are so important. My hematologist, Dr. Franco, my nephrologist who handled my plasmapheresis, Dr. Murphy, the doctors and nurses who surgically placed my permacath and port, the nurses and doctors at the infusion center, the many sonographers who take such care scanning my boy every week, the many people scheduling my treatments, drawing my blood, finding matching donor blood for the baby, monitoring the baby during and after IUTs, my OBs, Dr. Chwe and Dr. Howard, the blood donors who gave their blood in order to help a stranger. There are too many people to list but we are thankful for every one of them. Here is a picture of Jennifer and me on my last day of IVIG:
Please continue praying for our baby boy who has several IUTs ahead of him before delivery. Please pray for Dr. Trevett and all of the people working so hard to help our son stay healthy. Here are a few more pictures from the last couple of weeks:
Josh got to join me for the first IUT (only his second time in the OR out of 11 IUTs total)
It’s been a few weeks since I updated the blog. Our baby boy is still doing really well and holding his own against the antibodies week by week. I am now 23 weeks and 4 days pregnant which means that the baby is technically viable. The survival rates for a baby born at 23-24 weeks are not great, but survival is a possibility, which is reassuring. Hopefully he has many more weeks on the inside though!
Below you can see his MoMs for the past few weeks (1.5 means he is anemic enough to need a blood transfusion.) I’ll include Callum and Nora’s numbers for comparison.
Here are Callum’s, Nora’s and Baby’s MoMs:
A few weeks ago we noticed that my titer had gone up from 128 to 512 and baby’s MoM was higher so Dr. Trevett decided that we should repeat the three rounds of plasmapheresis.
After the plasmapheresis treatments I had a double loading dose of IVIG. This seemed to lower baby’s MoMs and my titer went back down to 128. The goal is to help the baby fight off the antibodies and avoid fetal anemia for as long as possible. The later we start IUTs the better since those come with some serious risks and must be repeated every 2-3 weeks until delivery. After the extra plasmapheresis treatments we finally decided it was time to remove my permacath which had been causing problems almost from the start. The permacath is the bulky, double lumen catheter that is used for plasmapheresis treatments. It kept getting clotted and the adhesive on the dressing caused allergic skin reactions. Since the baby is now viable and IUTs are a little bit safer there is no need for any more plasmapheresis treatments, so we knew I wouldn’t be needing the permacath again. It was such a relief to get that thing out of my jugular! I finally was allowed to shower/swim for the first time in 9 weeks and I can pick Callum up without worrying about snagging or pulling on the permacath. I now just have the regular port under my skin that we use every week for my IVIG infusions. That will be surgically removed once we finish IVIG treatments (whenever the first IUT is needed.) Here’s a picture of the permacath before and after removal.
Our baby is still measuring big, usually about 2 weeks ahead, so that is a comfort knowing he will have to be born early. Dr. Trevett’s goal is to do the last IUT at 34-35 weeks and deliver 2-3 weeks after that. But we know realistically that the baby might have to be born anytime between now and 37 weeks. Please pray that the baby will not be born until August (when I’m 34+ weeks.) Here are some pictures of my gigantic belly and our sweet boy. Thanks as always for your amazing support, prayers and encouragement as we navigate this stressful pregnancy.
Our baby boy is still holding steady and doing well. At 17 weeks his MoM was 1.08. Yesterday at 18 weeks his highest MoM was 1.2 and there were no signs of extra fluid, dilated heart or echogenic bowels (possible signs of anemia.) He is growing beautifully and now weighs 9 ounces. He consistently has been measuring about a week or two ahead each time. I fall more in love with him at each ultrasound. What a blessing to get to see my baby grow week after week. He is always super active during his scans. This week the ultrasound tech told me he was the most active baby she had ever scanned. Here are a few pictures from his 18 week ultrasound:
This week has been difficult for me emotionally since this is the gestation that we found out Lucy was severely anemic. As I did during my pregnancies with Nora and Callum, I can’t help but compare this baby’s MoMs with Lucy’s MoM at 18 weeks. Here are all of their numbers together. Remember, 1.5 means the baby is anemic and needs an intrauterine blood transfusion. The closer to 1 the better.
All taken at 18 weeks gestation:
Lucy: 2.5 (no plasmapheresis, no IVIG)
Nora: 1.3-1.48 (plasmapheresis and IVIG)
Callum: 1.3 (plasmapheresis and IVIG)
Baby: 1.2 (plasmapheresis and IVIG)
All of the conversations I had with my MFMs in Alabama during my pregnancy with Lucy come back to me now- asking them to please do an early MCA scan to check Lucy for anemia, asking if we should start plasmapheresis and IVIG treatments, asking for more monitoring, etc. I think of the many times my concerns for Lucy were brushed off. The consequences of those doctors’ decisions still ripple through our family monthly, weekly, daily. Yet the doctors had no consequences and even more disappointing, they didn’t learn from their experience with Lucy. That large teaching hospital still has not updated their monitoring/treatment protocols and they do not offer plasmapheresis and IVIG to patients in similar situations. This is why I have to drive four hours each way just to get an ultrasound every week. Why, after seven years, has there been no improvement? Even after such a catastrophic loss? I think the answer is partially rooted in the fact that the people who made those decisions are not feeling the consequences of their choices. I am. Josh is. Liam, Asher, Nora and Callum are. Lucy got the brunt of it. The other patients who don’t get the best care are feeling the consequences. And it is hard for me to process that emotionally right now. Lucy was worth the extra effort it would have taken for the MFMs to monitor and treat her HDFN correctly. Her life was worth it. I wish they had felt the same way. This baby is getting all of the right care, the right monitoring and the right treatment from an MFM who sees how valuable his life is. It’s beautiful and it’s heartbreaking because Lucy deserved the same treatment that her siblings received and she deserved the same chance at life that they got.
This weekend we had some pretty bad storms in Alabama and there was a possibility of tornadoes in our area. We watched the weather man (James Spann) all day and were ready when the tornado siren went off. All the kids had their helmets on and were in the bathtub within a minute of the tornado warning being issued. Thankfully we were unaffected by the tornado and everyone is safe. James Spann kept repeating a phrase throughout the day that I have not been able to get out of my head. When there were signs of a rotation on radar but they weren’t 100% positive that there was a tornado down, they would still issue a tornado warning for the area. He said, “It’s always best to take the course of least regret.” The phrase resonates deeply with me. So often I see MFMs go the opposite route and provide the patient with the least amount of monitoring possible. But why? What if every single MFM decided to take the course of least regret? If the literature says to scan every 1-2 weeks, then do a scan every week to be safe. Check titers often, check on the baby often. If the MoMs are trending high, then rescan in a few days. Take the course of least regret because the stakes are so high. Lives hang in the balance and the consequences of the doctor’s monitoring and treatment decisions can affect patients for years and decades to come.
Next week will be hard emotionally for me as well since Lucy died at 19 weeks, so I am bracing myself for that. But I am so incredibly thankful for my healthy boy and my amazing doctor who provides such thorough care for us. He leaves no room for regret, regardless of the outcome of this pregnancy.
We checked my titer again this week and unfortunately it has gone from 128 a couple of weeks ago to 512. I will be doing three rounds of plasmapheresis next week in Atlanta and a double loading dose of IVIG right afterwards to try and bring my titer down. Our goal is to help this baby make it as far as possible before needing an IUT. I’m really hoping we can get to viability (22-25 weeks) before needing intervention. Please continue praying for our boy and for our care providers. I hope everyone is staying safe. I will update the blog after next week’s ultrasound.