So, Part 1 took us through Christmas and a season of celebrating two of the best gifts we’ve ever received – our baby girls. At that point we were just into our second trimester and excited to start the New Year!
Because of the abnormalities seen during our early-December ultrasound, along with the general increased risk of a twin pregnancy, our regular OB decided to refer us to the Maternal Fetal Medicine group at Carle Hospital in Champaign. MFM physicians are trained specifically in high-risk pregnancies and use advanced diagnostic tools to help identify more complicated pregnancy issues. And that is where we’ll begin Part 2.
Our first Level 2 Ultrasound at Carle MFM. Getting a Level 2, or ultrasound anatomy scan, is fairly routine for all women in their second trimester – not just us “risky” mamas. It is essentially a very detailed look at those tiny human(s) who are growing and developing in miraculous ways. You get to see not only their sweet little faces, but also all of their organs and anatomy. It really is an amazing experience.
Our Level 2, however, came with more concerns for Baby A. She was found to have intrauterine growth restriction (IUGR), meaning she fell below the 10th percentile in size for her gestational age. In addition, they had non-visualization of her gall bladder (it could not be seen on the ultrasound), echogenic bowel (intestines appear to be “bright” which is abnormal), an absent nasal bone and her heart seemed to be too close to the outside of her chest cavity. Our doctor explained that in isolation, each of these issues would be less concerning – but because we were seeing so many anomalies in one baby, he was truly concerned about what we might be facing with Baby A.
Baby B still seemed to be right on track.
Because we were just 20 weeks at the time, the doctor decided he wanted to see us again in a month to give both girls a little more time to grow and develop. He said at that time we would also do a fetal heart echo for both babies, to make sure their hearts were looking anatomically correct.
Another excruciating 4 week wait.
Four weeks came and went, and in that time I finally started to feel the girls moving. It was the BEST feeling I’d ever experienced…and still is to this day. Kade and I both kept busy in the month of February with work and the start of baby pig sale season. We also did some traveling, and even spent a week in Florida – part “baby moon” and part work with Kade spending two days judging the Florida State Fair swine show.
Long story short, the day of our second Level 2 and fetal heart echos had arrived. Earlier in the month, we asked my parents to come out for the appointment – first because it is an incredible experience to see those sweet babies, but also because we knew we might be getting some tough news. They flew in that morning, and we all headed to Champaign.
With the four weeks of growth since our last scan, the doctor was able to see a lot more of what was happening with Baby A. He said the IUGR was still a major concern, but was really the lesser of our worries. What he saw with our little Miss A was a congenital diaphragmatic hernia (CDH) – a hole in her diaphragm that was allowing organs from her abdomen to move into her tiny little chest cavity. That, he said, explained why they couldn’t see her gall bladder in the earlier ultrasound.
Although at the time of her diagnosis we had no idea what CDH really meant, we learned more as the weeks and months passed. Only about 1 in every 2,500 babies in the U.S. is born with CDH, and the severity can vary significantly from baby to baby – but from best- to worst-case scenarios, there is only a 50% survival rate. And that is for the babies who make it to birth. Unlike most CDH cases, in which the hole occurs on the left side of the abdomen, Baby A has a right-sided hernia. That is also why the doctors were seeing her little heart pushed against her left rib cage. Abdominal organs, including at least part of her liver, had moved into her chest pushing her heart over.
One of the major concerns of CDH is that with all of those organs displaced into the chest cavity, lung development is restricted, resulting in pulmonary hypoplasia. This is not a concern while the baby is in utero since everything they need to survive is provided through the placenta…but as soon as she is born her own lungs would need to take over the function of breathing. And that is where things get tricky. The amount of lung tissue that was able to develop is critical to a CDH baby’s survival…and that usually cannot be assessed until birth.
Needless to say, we were completely overwhelmed by all of this information. We were so blessed to have my parents with us at the appointment to help us keep perspective. We couldn’t let these circumstances dictate our joy for the remainder of our pregnancy. We still had two little babies growing each day and two little hearts beating strong. We were still so incredibly blessed.
By this point, the doctors at Carle had told us that our pregnancy was too complicated for them to handle at the point of labor and delivery. Our girls, especially Baby A, would require a level of care that is offered at very few facilities across the U.S. So we had started the search for our third team of doctors in this pregnancy. We found a place in Chicago and immediately knew it is where we wanted our girls to be cared for – Northwestern Memorial and Lurie Children’s Hospital – two top-rated facilities that work together to provide the best care for high-risk mamas and their babies. The process of setting-up consultations with these doctors had started, and was expected to take place the end of April. For us, it was just more waiting…something we’d become quite accustomed to.
In the meantime, we continued Level 2 ultrasounds at Carle every few weeks to monitor both girls’ progress. Each appointment the doctors would assess their growth, heart function and do Doppler scans for Baby A. Doppler scans are commonly used for IUGR babies – they measure the blood flow through baby’s umbilical cord, brain and heart to ensure she is getting the necessary oxygen and nutrients she needs through the placenta.
It is expected that at some point in growth-restricted babies, the blood flow observed through Doppler will change in an adverse progressive manner. At our April 3rd appointment, our doctor saw that Baby A’s Dopplers had moved from what is considered “normal” flow to a reduced diastolic flow. Meaning, she’d moved into the first of three regressing categories:
- Reduction in end diastolic flow
- Absent end diastolic flow
- Reversal of end diastolic flow
Because of this, they now wanted to see us twice a week to monitor her through Dopplers and Non-stress tests. We would watch the regression closely through this bi-weeky monitoring and, once we reached the reversal stage, we would have to make a decision on whether or not to deliver both babies. At just 29 weeks, we were still at a gestational age that would be risky to deliver for both girls.
The message they were sending us was difficult, but clear – depending on their gestational age, we would have an unimaginably impossible decision to make – would we intervene on behalf of Baby A no matter what, at a risk to Baby B’s health and development… or would we choose to let Baby B develop as long as possible at the likely detriment of Baby A.
This is a decision no parent should ever have to face. We were not there yet, but knew at some point sooner than later, we could be. In a situation like this there is really only one thing you can do – hold on to each other and pray. Not just for the health of your babies, but for strength and understanding regardless of circumstance.