My hope for these Feature Friday posts is to educate and encourage. Our family knew nothing about clefts and what they involved until we were given the gift of Jacob. (Just like we knew very little about Down syndrome before we were given the gift of Arbor.) The people who walked these paths before us helped all of us as we learned more and more about diagnosis and care. Hearing others’ stories and experiences taught us and reassured us of our ability to care for our treasures needs.
Our youngest treasure, Jacob, was born with a cleft lip and palate. He is our daughter’s baby boy. Brooke is our guest writer today to share the beginning of their story.
In Brooke’s words from Brooke’s heart…
On a rainy April morning, Blake and I met my mom (Cindy) and Blake’s mom bright and early to get to my OBGYN at 7:30am. We planned on leaving around 6:30/6:45 to make sure that we had plenty of time to get there. For anyone who knows I65-N from Bullitt County to Norton Women and Children’s Hospital at 7am on a weekday in the pouring rain, you know that we should have planned a bit longer for that trip. I was stressed, we were running late, I was not allowed to go to the bathroom until AFTER our anatomy scan, so I was incredibly cranky (I was generally not a pleasant pregnant lady anyways). We arrived late to our appointment and the wonderful women at my doctor’s office were able to move things around like it was no big deal. As we were all called back for the “big” ultrasound, the level of excitement rose. Blake and I had already seen the baby twice before this particular ultrasound, but he had looked like a little gummy bear. Our moms were getting to see it for the first time. We were all excited to get to see our little gummy bear in more detail!
As the picture came up on screen, everything seemed to be going normally. The ultrasound technician talked us through all the measurements of arms, legs, head, etc. Looking back now, I can remember her taking more pictures of the nose and mouth than she had taken of other parts of his body. At the time, however, I didn’t think anything of it. The ultrasound technician had trouble getting a good picture of his heart, but chalked it up to him being wiggly. After we had our fill of baby pictures and all the measurements were completed, the ultrasound technician took our moms back to the waiting room, and took us back to an exam room for the rest of my appointment. When our little, sweet doctor told us that they saw something unusual on the ultrasound, it didn’t quite resonate with me. She let us know at that appointment that there was a possibility of the baby having a cleft lip. At the time, I had worked in an outpatient therapy clinic, and was somewhat familiar with cleft lip and palate. Our doctor explained that we would be referred to maternal-fetal medicine to have a more in-depth ultrasound before they would confirm a diagnosis.
On the way home, it hit me: something could be wrong with my baby. I had been very sick for months and was prescribed a very strong anti-nausea medication for most of the first half of my pregnancy. Could this medication have hurt my baby? Surely the hospital would not have prescribed me something that could hurt this sweet little gummy-bear. I felt so guilty. I knew that this was not a fatal diagnosis. It was even something that could be repaired. To me, however, I knew it could mean multiple surgeries and years of speech therapy and intense, possibly painful, orthodontic treatment. It could be an indication or symptom of other health concerns. Our family and close friends prayed for a mistake in the ultrasound and prayed for the MFM ultrasound to be clear.
So began the last half of my pregnancy. It took almost three weeks to get into the MFM clinic at Norton (one of the longest periods of my life). We started the appointment meeting with a genetic counselor who screened the medical histories of both sides of our families for genetic abnormalities. The genetic counselor asked if we wanted to do an amniocentesis. The genetic screening bloodwork we had completed at my OBGYN office was normal, so we declined and moved on to the ultrasound room. The excitement we felt at our last ultrasound had faded and was replaced with anxiety. The anxiety grew as we waited for the doctor to come in and go over the ultrasound. We found out that we would be having a sweet baby boy with a unilateral (one sided) cleft lip and a high probability of a cleft palate. The MFM doctor explained that during the first few weeks of pregnancy, the midline of the fetus begins to almost “zip” up from the abdomen to the face. For some unknown reason, as our little boy developed in these first few weeks, his mouth did not “zip up” the way it was supposed to.
With tears in my eyes, I voiced my guilt and concern about the medication I had been taking to the doctor. He assured me that our little boy had a cleft lip way before I even knew I was pregnant. At this point, we were referred to plastic surgery for preliminary consultations and neonatology to prepare us for other possible complications that could occur after delivery. We were told that the doctors would be keeping an eye on his heart, since cleft-affected babies often have other midline defects. We toured Norton’s NICU to prepare for the possibility of breathing issues, feeding tubes, and other complications. We returned to MFM to check his growth and heart functions. We had so many appointments and ultrasounds during those last 4.5 months.
The fear and anxiety ebbed and flowed throughout those months. Around 31 weeks we went for a 3D/4D ultrasound with our parents where we were actually able to see his face for the first time. As we saw his face on that screen the fear began to melt. While the anxiety for both the known and unknown procedures he would face lingered, I was no longer afraid to meet him. I was excited to meet our son and knew that everything would be okay.
To Be Continued…
Thanks for reading the beginning of Jacob’s story! Watch for the cotinuation in the next few weeks!