Learning and Relearning

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.

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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 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!

 

Third Trimester and IUT #3

Today I am 28 weeks pregnant and my boy is healthy! What a gift to be able to make it all the way to the third trimester with a living baby inside. So many women never make it this far. What I would have given to get all the way to 28 weeks with Lucy.
We just had the third IUT on Friday and baby handled it really well. Dr. Trevett scheduled this IUT for exactly two weeks after the previous one. The baby’s MoM on Tuesday was around 1.39 and we did the transfusion three days later. We followed the same sedation methods for baby and me as we did last time and it worked well again for both of us. The baby’s hematocrit was much lower than I expected- 20.9 and he was basically surviving off of the donor blood Dr Trevett gave him two weeks prior. They got his hematocrit up to 40 and baby is now 100% Kell negative donor blood. We will do the next transfusion in 13 days. The reason we have to continue doing intrauterine blood transfusion even though baby now has Kell negative blood is because the donor blood eventually dies off and the baby needs more blood as he grows. Doctors use a calculation to determine when the baby will drop low enough for another transfusion. They estimate that the baby’s hematocrit will drop one point per day, so if the baby is at 40 right after the IUT, he will be around 27 at his next IUT in 13 days. 
Next week I will have my chest port removed since I’m not using it for IVIG infusions anymore. I’m excited to finally be port and permacath free in a few days! Dr Trevett’s goal is to do the last IUT at 35 weeks and deliver at 37 weeks. If that is the case then I have four IUTs left which is overwhelming to think about. Thank you as always for the prayers and support as we navigate the last portion of this pregnancy. Here’s a picture of the belly at 27 weeks  (measuring closer to about 30 weeks.) 

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First and Second IUT

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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:

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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:

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Josh got to join me for the first IUT (only his second time in the OR out of 11 IUTs total)

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