At 11 weeks pregnant, I learned that somewhere between my 2nd and 3rd (current) pregnancy, I had developed 4 different red blood cell antibodies. I had received the rhogam shots during and after both my prior pregnancies. Yet for some undetermined reason, I still developed antibodies. My titers (the amount of red blood cell antibodies in my blood) indicated that I had very high levels and so I was immediately referred to the leading perinatal doctors in the greater Phoenix area. (Titers at 12 weeks: Anti D 1:2048, Anti Big C 1:32, Anti E 1:32, and Anti S 1:8)
I went home and researched as much as I could about this condition. I learned red blood cell antibodies can begin crossing the placenta around 10 weeks. They attach to the babies red blood cells and then the baby's body flushes those red blood cells out. In aggressive cases, babies cannot replace red blood cells as quickly as they are being destroyed. They can become very anemic and require intrauterine blood transfusions (IUTs) in order to live. I also learned that is is very common to have a mild case with your first affected pregnancy and that antibodies may become more aggressive with each additional affected pregnancy. That gave me hope, but I still felt uneasy because my titers started out so high. I came across a Facebook group for moms with red blood cell antibodies (ISO Moms). They answered a lot of my questions and shared some research documents and possible treatment options.
At 14 weeks, I met with my perinatal doctors. I was told there was nothing to be done until 18 weeks, as babies aren't usually affected before then and MCA scans (to determine fetal anemia) weren't accurate until then anyways. I brought in a copy of Dr. Moise's (a specialist in Texas) treatment research, which included plasmapheresis and IVIG to help lower antibody levels. My doctors told me that no one does those treatments and they aren't proven to be effective. They seemed annoyed that I had so many questions and had researched treatment options.
At my 18 week appointment, my baby's MCA scan showed he was very anemic (MoM of 1.6). Four days later, the MCA scan was considerably worse (MoM of 2.1). I had read that anything over a 1.5 was dangerous and transfusion was necessary.
Intrauterine transfusions (IUTs) are easier when baby is over 22 weeks because the baby typically doubles in size between 18-22 weeks. As there is always a risk that the umbilical cord will spasm (and stop blood flow and oxygen to the baby) if the IUT isn't done precisely, it is very difficult to transfuse a smaller baby.
So for this reason, and because baby did not show any signs of hydrops (organs filling with fluid) my doctors wanted to wait until at least 20 weeks to begin blood transfusions. My doctors agreed to scan twice a week to check for hydrops. I understood that early transfusions were risky, but everything inside me was screaming that my baby would not be alive in 2 weeks.
I shared my story with the ISO Moms Facebook group and many of them expressed sincere concerns that my baby would not make it 2 more weeks as well. They urged me to contact Dr. Moise in Texas about my case. I took a few hours away from Facebook, family, doctors, etc and just prayed and prayed that I would know if my baby could wait or if I needed to take immediate action. Over the prior month, this Dr. Moise from Houston, Texas was always on my mind and I realized that I needed to at least try to contact him.
The next morning I e-mailed Dr. Moise with my MCA scan results and asked for his advice. I honestly figured he wouldn't talk with me as I wasn't his patient, but I had to try. To my surprise, Dr. Moise called me and we talked on the phone for an hour about my case. He said that if I could find a way to get to his office the next day (a Thursday), he could begin IUT's that Friday, if his tests confirmed that one was really needed.
I knew with everything inside me that I had to go. I called my husband and said you have to trust me, but I need to go to Texas tonight! I got on a midnight flight and arrived in Houston early the next morning and went straight to Dr. Moise's office. We spent almost 5 hours doing scans, consults, blood work, etc to get ready for a transfusion the next day. Dr. Moise and his staff were amazing, I have never had such great care! My baby's MCA scan showed an mom of 2.37 and Dr. Moise felt that baby only had a 10% chance of survival if we waited.
At exactly 19 weeks, my baby had his first IUT. The first step is to pull a sample of blood from the umbilical cord to determine the baby's exact blood count, so the Dr. will know how much blood to transfuse into the baby. My baby's hematocrit was 6. The IUT was successful, but Dr. Moise told me that he had not seen a baby still alive with such a low blood count, and that although baby was still alive, he was probably too weak to handle the transfusion. All we had left to do was wait and see if baby was still alive in 24 hours. I could barely sleep all night, all I could do was concentrate on how often I felt the baby move so that I would know he was still with me. (Which was difficult because I was not feeling every movement yet, being only 19 weeks along). The next day, an ultrasound confirmed that baby had a strong heart rate, which was a very good sign that his little body was handling everything!
Dr. Moise did a second successful IUT just four days later (as he only did a partial the first time, so the baby would not be too overwhelmed). Followed by another successful IUT at 22 weeks.
Our 4th IUT was scheduled for 25 weeks, at this point the baby is considered viable. We had to sign forms stating what life saving measures we wanted if the transfusion had complications (umbilical cord spasms, etc). We said to give baby as much time to pull through as possible, but if it looked like he would die, then to deliver.
Since we had opted for life saving measures, the surgical room was filled with a dozen specialists that were prepared to handle any possible complications. During this IUT, my baby kicked the needle out of the umbilical cord while they were trying to administer sedatives. His heart rate severely dropped, and they told me they needed to preform an emergency c-section or he would die. I agreed and within seconds I was fully sedated and intubated. When I woke up, I was told my baby was ok and still inside me!!! Dr. Moise was about to preform a c-section and everyone in the room was scrambling to get into place, when he felt strongly that he needed to wait 1 more minute. It was a risk, because 1 more minute of baby not getting blood and oxygen is a long time, however, he still felt strongly that he needed to wait. At almost a minute, my baby's heart rate began to stabilize and he did not need to be delivered!!!! I had felt strongly, time and time again, that I needed to go to this specific doctor, and this was just another confirmation of why. I truly believe that my doctor was able to listen to the promptings of the Holy Ghost, to know how to best take care of my baby. After all this, there was no way anyone was in the mind set to finish the transfusion, so it was rescheduled for the next day. Thankfully my next 3 IUT's went smoothly!
At 32 weeks along, my 7th IUT, we discovered that there was a blood clot in one of the umbilical cord arteries. We were on high alert again for a possible delivery during the transfusion, but the blood clot cooperated and the remaining artery held up well!
At my follow up visit at 32 weeks, my doctor said I had developed polyhydramnios, increased amniotic fluid. Baby had been thoroughly checked and was determined to be fine, so the main risk was an increased risk of pre-term labor and if it was safe for me to continue to fly. They cleared me to fly home and if I was clear to fly back at 35 weeks, then I would do so. If not, my baby would be delivered early at 35 weeks in Phoenix.
At 35 weeks, my 8th and final IUT, I was cleared to fly and all went successfully!!! I cannot say how grateful I was to have made it this far and also be done with the stress and anxiety that come along with them. The plan was to induce delivery at 38 weeks.
At exactly 37 weeks, my baby failed his non-stress test in the doctor's office. I was sent to the hospital for another NST, which he failed again. My baby, Caden, was delivered 30 minutes later via c-section. I got to see him for about 30 seconds before he was taken away for testing and to be under phototherapy lights. His bilirubin was 9.5 and then 4 hours later, was 14, which is very high for right after birth. They started him on IVIG therapy and ordered blood for a transfusion. It took about 6 hours to get the right blood and so they did a second round of IVIG while waiting. They transferred him by ambulance to a children's hospital, where he received a full exchange transfusion, followed by another full exchange transfusion 2 days later.
He spent a total of 19 days in the NICU, fighting to get his bilirubin numbers down and maintain his body temperature. He stayed under the phototherapy lights constantly for the first week, his poor skin was so dry, I was worried he was going to get blisters. I finally got to hold him and feed him a few days after birth. His bilirubin hung around 20 for the next couple of weeks and he failed 3 newborn blood screenings- so he was diagnosed with a metabolic disorder. I kept asking if this could be because of all the transfusions, but no one really knew for sure. His liver enzymes were elevated as well, and he had several ultrasounds to check on the health of his organs. After 19 days, his bilirubin was still high (13) but was finally going down in the right direction. We were released to go home, but with a lot of follow up doctors visits and blood work.
Over the course of bringing this little boy into the world, he nearly died twice, was nearly delivered early twice, we were told he might have brain damage from his extremely low blood count at 18 weeks, we were told that he could have brain damage and hearing loss from his bilirubin being so high for so long after birth, and told he had a metabolic disorder- and all of that is gone now! It took about 6 months for all of his blood work to return to normal, but now he is a perfectly healthy, happy, wild and fearless, little boy!