We found out last week that our baby has a condition known as ventriculomegaly and probably (although a definitive diagnosis will not be made until a an MRI can be done after birth) agenesis of the corpus callosum. Now before you scare yourself silly with Dr. Google like I admit I did, let me share what the doctor shared with us about what this means. Ventriculomegaly is basically an enlargement of the fluid filled ventricles in the brain. It can occur for several reasons, but often resolves itself during the pregnancy, especially if it is a mild case. In the case of our baby, the enlargement is considered very mild. A measurement of less than one centimeter is considered normal, while a measurement between 1 and 1.5 is considered mild and greater than 1.5 is considered moderate to severe. Our baby had measurements of 1.12 cm on one side and 1.2 cm on the other. We will have a few more ultrasounds along the way to make sure that it doesn’t get worse (which the doctor said was unlikely) and if it doesn’t, then it should not cause any complications during or after birth or require treatment.
Agenesis of the Corpus Callosum is a congenital condition in which the portion of the brain which communicates between the two hemispheres, the corpus callosum, does not develop. ACC is not like an illness that gets better or worse with time or treatment- if the corpus callosum did not develop in the first trimester, it will never develop. It sounds scary, I know, to say that part of the brain is completely missing, but our brains are truly amazing in their ability to overcome challenges. ACC affects each person differently but some babies born without a corpus callosum experience only subtle differences in the way that they process information (and that isn’t a bad thing- just different!) A few people people may even live their whole lives and never know that they were born without a corpus callosum. However, for other individuals it can cause developmental delays and significant learning disabilities, difficulty in social situations, and even seizures. The full impact that this diagnosis will have on our child’s life as he grows is impossible to know at this point, and we have basically been told that we will just have to “wait and see.” We are choosing to be optimistic and not burden our son with expections of what he might or not be able to do. He will show us who he is and what he is capable of accomplishing, and we will learn from him what kind of support he needs from us along the way. Isn’t that what parenting is all about anyways?
We were very relieved to learn that while both ACC and ventriculomegaly have a high association with several severe medical complications, none of our ultrasounds so far have shown ANY indications that our baby will not be healthy. The doctor showed us a checklist of other things that they look for when ACC is detected (every thing from other brain abnormalities to heart, kidney, and midline facial defects) and our baby looked great on every single point that they checked. Of course, ultrasounds are not infallible, and there may be something that isn’t clearly visible with the ultrasound. Our baby will have to undergo several tests and screenings after birth including an MRI, genetic testing (we declined amniocentesis at this time since it would have no effect on treatment during the pregnancy), heart and vision testing, etc… and his development will be carefully tracked after birth.
Our doctor suggested the NIH website for accurate information about ACC or ventriculomegaly, if you want to learn more. I have also found this website to be very informative. I found it especially encouraging to read through the personal stories of others living with ACC. I still have so much to learn, as ACC is a diagnosis I had never even heard of before last Wednesday.
So that’s it in a nutshell. Of course our feelings over the past week since we learned the diagnosis have been much more complicated than that, so feel free to read on for a more personal account of the emotions we have been navigating:
Where do I even begin? I haven’t blogged much about this pregnancy (or anything else!) lately, and there are several reasons why. Of course, there has been the pregnancy exhaustion and the day-to-day busyness of life with a toddler. Truthfully though, my feelings over the course this pregnancy have been difficult to write about.
I have struggled with not allowing myself to get too excited this time or to become too attached to this little one after our loss last year. Not that I didn’t want to. I wanted desperately to feel that same naive, giddy excitement I felt when I was pregnant with Miles even for the beginning of my pregnancy with Hope, and was consumed with guilt that I felt so detached. The fear of another loss just hung over me like a cloud. I started to feel better as we passed the 16 week mark, and then the 17th, and the 18th. When the time came for my 20 week ultrasound and my cervix still looked good, I was ecstatic. There hadn’t (and thankfully still hasn’t been) any bleeding or other signs of preterm labor. I felt like I could finally breathe! I was so excited that I never thought anything of the doctor’s suggestion that we have a repeat ultrasound in one month to look at the baby’s brain. He said that the baby wasn’t in a good position to get a good view, and I thought that was all there was to it.
Last Monday was my 24 week ultrasound. I went by myself. I remember thinking that the ultrasound tech seemed much less talkative than usual. And that she took an awfully long time after she said she needed to go get the doctor. I laid there for what seemed like eternity waiting. When they finally returned, they really didn’t tell me much other than they wanted me to have second opinion ultrasound with a perinatologist because there was some concern about the baby’s brain development. I know they didn’t want me to worry to much until they had more information, but not knowing what was going on tore me apart. The ultrasound tech was very kind and sat with me for quite a while as I regained my composure. I wish I hadn’t gone by myself because I wanted so bad to have Stephen with me there at that moment, but instead I left by myself and just drove around for a while so that I could calm down before I went to pick up Miles and tell Stephen.
The next day was a nightmare. I couldn’t keep my mind from returning to the worst case scenario; that we would lose this baby as well. But after a good long talk with Stephen, a lot of prayers, and some crying, I did start to feel some peace. I thought about the glimpses of that beautiful little face I had seen on the ultrasound screen and knew that no matter what diagnosis was coming, it could never change the love that Stephen and I feel for this sweet little one.
On Wednesday, Stephen and I headed up to Springfield for our level ll ultrasound prepared ( as we could be) for the worst, but hoping and praying for the best. One thing about long car rides, they are great for conversation. We talked and talked about our preconceived notions of a “perfect” child, and how our expectations inevitably change as we get to know who are children are and fall in love with their unique personalities. We talked about or fears and concerns about parenting a child who may have disabilities. We even decided on the baby’s name for sure (the ultrasound tech at our last ultrasound accidentally spilled the beans about the baby’s gender, but we’re still not telling everyone just yet!)
A long and very detailed 2D and 3D ultrasound revealed what our doctor back home had apparently suspected: that the baby has slightly enlarged ventricles in the brain, and that there is no visible corpus callosum. It also revealed a beautiful, precious, and yes, PERFECT little one. We watched in awe as our baby sucked on his little thumb and played with his hands. I have never seen a 3D ultrasound and was amazed by the level of detail we were able to see. The news was obviously not what we had hoped to hear, but we were relieved to learn that there were no other abnormalities found on the scan whatsoever. The doctor and genetic counselor we spoke with at St. John’s were both very encouraging about our baby’s prognosis, yet realistic about the struggles he may face. They said that if follow up ultrasounds continue to show only mild ventriculomegaly, I should still be able to have the baby in Rogers with my regular doctor attending the birth.
The past week has been hard, one of the most difficult that I have faced. But it has also reminded me of just how precious life is and just how much I have to be thankful for.
I love you my beautiful child, just the way you are.
“For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.”
-Psalms 139: 13-16
Please keep our family in your prayers as we prepare to welcome our new child to the world.