“I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” Psalm 139:14
Many of you have read the story about how our birth plan moved from home to a hospital, but there’s more to that story (read about the Rollercoaster here).
On September 4, 2015 at 35 weeks pregnant I was sent to a maternal fetal specialist because of my moderately high blood pressure. We had anticipated a clean bill of health and her blessing to continue my pregnancy care with our family doctor. We arrived at our appointment at 8 am and started with a level 2 fetal ultrasound. During the ultrasound we discovered that miss Lyla had a LOT of hair! The sonographer was tickled and said that she kept getting distracted by the amount of hair that she has. We learned that Lyla was already measuring at about 6lb 6oz and was rating in the 70th percentile for size! Whoo nice big baby!
After the sonogram, which lasted about 30 minutes, we were released back to the waiting room and waited to get called back to see the specialist. I sent a message to a friend that said “Lyla is perfectly healthy, now we are just waiting on them to check on me!”. Here’s the thing I sort of knew, but I had forgotten…the sonographer not only has the responsibility of checking your unborn baby from head to toe, she/he also has the very difficult task of keeping a straight face when something abnormal is detected. We left her room on cloud 9 with a fistful of ultrasound pics.
A few minutes later we get called back and sit down with a nurse. She started out by telling us things we already knew. Lyla was measuring well. Her heart was perfect. Her lungs were perfect. Then she kept talking and somewhere in there my heart stopped listening. What she was telling Jairus and I wasn’t registering with us until she said “it is possible that she may need a shunt placed to drain the fluid off her brain”.
Wait. What did she just say? What was she telling us?
That was the instant that we learned our precious, unborn baby girl, has Agenesis of the Corpus Callosum and Hydrocephalus.
Don’t worry about googling it, even though I’m sure you will. 🙂 Here’s what we know about this diagnosis so far:
Lyla is PERFECT. She was created in God’s image and nothing that any doctors tell us will change that.
The Corpus Callosum is the group of fibers that connects the left and right hemispheres of our brain. Some people are born without it, while others have some and the rest of the population has the entire thing.
Not having a Corpus Callosum could mean a very ride range of things. In fact, some people go through their entire lives without a CC and have no idea (they wouldn’t know without having an MRI done at some point in their lives).
Here is what Wikipedia says about it:
“Agenesis of the corpus callosum (ACC) is a rare congenital disorder that is one of the most common brain malformations observed in human beings, in which the corpus callosum is partially or completely absent. ACC is usually diagnosed within the first two years of life, and may manifest as a severe syndrome in infancy or childhood, as a milder condition in young adults, or as an asymptomatic incidental finding. Initial symptoms of ACC usually include seizures, which may be followed by feeding problems and delays in holding the head erect, sitting, standing, and walking. Other possible symptoms may include impairments in mental and physical development, hand-eye coordination, and visual and auditory memory. Hydrocephaly may also occur. In mild cases, symptoms such as seizures, repetitive speech, or headaches may not appear for years.”
The specialist came in the room and she was amazing. She was very warm and gentle with us. We didn’t ask very many questions because we didn’t know what to ask at that point. We learned that because of my blood pressure, it would be a good idea to induce labor at 37 weeks (which was only a week an a half away). Not only would it be wise to induce, it would also be a good idea to make sure Lyla is born at a hospital that has a NICU (neonatal intensive care unit) just in case she has breathing or other issues immediately after birth.
Woah. Now you’ve got my attention.
We were asked if we knew of a doctor in town that we would like to have deliver Lyla at this hospital. As a matter of fact, just six days earlier I had attended a birth as a doula and my client had a doctor that I felt like I connected well with. Outside of this birth, I had no clue who she was, but she was the one that I was going to have to trust to make sure my baby gets here safely.
That day we visited the NICU and this new doctor was able to get me squeezed in for a prenatal appointment. After all, we only had 11 days before the induction and we lived an hour an a half away from the hospital, we had to fit everything into this day that we could. Jairus and I were a wreck. We of course had no clue this day was going to go how it had, and we had brought our boys with us. Not only were we having to process this entire thing, we had to figure out how to explain to Lyla’s brothers why we were crying and seeing way more doctors than we had originally planned.
We went home that day with heavy hearts. There was so much left to the unknown. The thing that became very clear to us very quickly was that nothing we learned that day changed what we felt about our daughter. Yes we were scared, but we loved her more and more each day. We knew that she was created by a very loving God and placed in my womb for a very distinct reason.
I am lucky to have been picked to be her mom. God must think that I can handle this.
Coming up next: Lyla’s Birth Story