This day would typically go by without any thought except maybe the occasional remark on how summer is flying and I can't believe we'll be celebrating the 4th so soon! But this year its different.
Today, July 2nd is National DCC day (in other words disorders of the corpus callosum). If your like me about two months ago, you probably don't even know what a corpus callosum is. Lets start basic - its in your brain and it connects the two halves of the brain - so sounds pretty important :)
May 2019. Pregnancy is super typical, maybe even "easier" that the girls since I never once had morning sickness and in general besides the normal tired or irritable at times feelings - have had it easy! We learned I was pregnant on Christmas Eve (which was just the best way to tell Mike as our one special Christmas Eve gift), told family and friends slowly over the next months, enjoyed vacations, found out the sex early and had that secret to enjoy ourselves, told everyone at Mackenzie's birthday party in April - a boy!!! We have been beyond blessed in the way the Lord planned when we got pregnant, how long it took this time, the girls being thrilled for a boy.. just so much joy! I had my standard 20 week ultrasound in early May and everyone came - nothing out of norm, everything looked wonderful. The doctor office calls me two days later to confirm the technician who read the results afterwards said all is well!
Then I get the phone call from the office: that one you slightly dread - actually something on the ultrasound is now standing out to the Dr... Could you come in to have another one done? Nothing other than that - so easy to have a pregnant mamas mind immediately go to the worst or to the oh probably just didn't get a good photo of the heart or spine and the Dr wants a better one..
Monday May 13th, Abby and I head into the office for the ultrasound. My mind is more concerned with what shell be doing on the iPad and how many snacks she's going to need :) The ultrasound tech does the best she can, poking and prodding and of course they aren't allowed to say much until speaking with the doctor. Afterwards when my ob-gyne comes in she does in fact say that the ultrasound revealed something on his brain - they don't know much other than his brain has a bit too much fluid and its something a level 2 ultrasound needs to look more clearly.
Tuesday May 14th, level 2 ultrasound Glenbrook hospital, both the ultrasound tech and then doctor look at the baby. Afterwards the doctor says he'd meet us in the room next door to discuss what he was seeing. He confirmed that the ventricles on the babies brain are larger than normal (we all have two lateral ventricles going front to back on our brain that hydrate the brain) - these are normally about 1 cm in size (10mm) and his are measuring 1.3/1.4 Nothing too above normal and considered a mild case. But what he said next is when our normal, typical, pregnancy taken a little bit for granted worlds changed. He said that they could not identify the corpus callosum, that part of his brain is underdeveloped. More talk, things we don't really hear... things we don't want to hear.... After listening to him talk for a few minutes all I could think to ask was "wait, so part of his brain is missing or non existent??" He, in doctor fashion says, i wouldn't say that- its just underdeveloped...
Here is when we learn a little tiny bit about ACC (agenesis of the corpus callosum). The CC is in the middle part of your brain - connecting the two hemispheres. Its a brain abnormality or disorder ~ maybe caused by genetics (we did no testing in this area), maybe caused just by chance and nothing else is "abnormal". Its a spectrum disorder - some people don't even know they have it till 30's or 40's when they get an MRI for another reason OR it can lead to developmental delays, learning disabilities, etc that are associated with a genetic disorder or not. The next steps he named are what shocked us - even at one point saying if we are going to terminate it needed to be then. We just watched our son move on an ultrasound for an hour, we just were told he could lead a typical life! We opted for a scheduled MRI to get a clearer picture of his brain and not do an amniocentesis or any other tests at this time.
Friday May 17th, thankfully again we got in right away to have an MRI at evanston hospital. Id never had one, didn't know what to expect and thankfully it went very smooth. I am thankful we had people praying for us those long days in between. What started as scary, through time and prayer led us to peace. Honestly, I feel asleep multiple times in the MRI - chalk it up to pregnancy hormones or being so tired emotionally but I know it was the peace that surpasses all understanding. After 75 minutes in the MRI, we were told results would come in 5-7 days.
We had a planned prayer time for Saturday morning with family and some friends - thankful for the people willing to come and for those who prayed with us from afar. The sweetest prayers were from the girls. Mackenzie specifically prayed for his brain to be healed (no one had told her she just heard our prayers and caught on) and for him to be whole. Abby prayed for mommy to be happy (she saw my tears) and for no medicine (she hates medicine lol). Their childlike faith, childlike prayers, patience amongst us during that time really was an miracle. I cried more during their prayers than the days leading to that! They were so incredible sweet.
Monday May 20th, early news again! The Doctor called me and all I remember from the conversation was that the CC (corpus callosum) was in fact PRESENT. Not missing AT ALL. He said other things about ventricles and follow up ultrasounds but all I focused on and thanked the Lord for right after was that it was THERE - chalk it up to ultrasounds and angles or MRI technology but we praise God for a miracle. What once wasn't there was found ;)
I should say in the midst of all of this I found two or three online Facebook groups directly related to ACC - a god send for sure! I was invited to the babies of 2019 with ACC and learned SO MUCH more from there and those ladies (focusing on the medical not the specifics of each case since each one is so individual) and felt so much peace. I went from being on the ledge of his life won't be "typical" and thinking about him not playing baseball, not having a wedding.. to being ok with things may be different but we are the perfect family for him and it will all be ok!
Since then we have had one more ultrasound and this time it showed his ventricle on one side his within the normal range and the other one is just above at 1.1cm. We have another scheduled in the coming weeks. I have met with the head of neonatology at the hospital and she confirmed nothing more to do for now outside of a MRI when he is born to get the best picture of his brain so far. But we don't need anyone special at delivery (at one point it would have bene NICU, a neurologist, etc...)
I wanted to share our story today not only to help spread awareness for brain disorders but to express our families thankfulness at how in the midst of trial- big, small, long lasting or not we felt incredible support by those who knew what was going on. Those who reached out on MRI day and continued to not just text once and forget but reach out over the last months to be kept in the know. I know we were lifted up in a hard time and that made it easier - I felt the Lords presence with us and even in those moments when I still question (what will his MRI show when he's born, what will he develop like with enlarged ventricles, what is the CC actually isn't there?!) I know the Lord is for us, with us every step of the way.
Individuals with disorders of the CC may look typical, but socially or developmentally may be far behind their actual age. Educating people (now you know) can help them be more accepting and compassionate around "invisible" disabilities and support families in an unknown time! I am thankful for days like DCC awareness day.
July 2nd - I will always know as DCC awareness day. It marks the midway point of the year - the point when the two parts of the year connect - just like the corpus callosum bridged the two halves of the brain. It consists of approximately 200 million fibers that connect the left and the right hemispheres of the brain and is called the brains "super highway". The CC is the part of the brain that brings those functions from left and right together in order for it to function as one. How incredible is it though that the brain has the ability to rewire and work around this? That kids and adults alike who have "two brains" are functioning and hitting typical milestones?? The new statistics of DCC are that 1 in 4,000 have some type of disorder within the CC and honestly SO MANY PEOPLE wrote into that Facebook group feeling SO down, so much negative energy, so many reports of doctors suggesting abortions (ACC is one of the top reasons for termination of pregnancies because of simple lack of understanding). I am thankful that group exists to give mamas & dad a reassuring it will be ok - the waiting in pregnancy is the hardest part. Although every case is different I saw so many smiling babies, toddlers, young kids and adults report in on their lives and some are very typical and some need support - but have thankfully found it!
I know we still have some steps ahead of us and we do appreciate your prayers for whatever lies ahead. But I also know that we are incredibly (beyond words) thankful/blessed/witnessed a miracle with our own case. I hope that in sharing our small story that if other moms and dads come across this diagnosis they know they can talk to us - and I can get them plugged into resources I found in a hard time. Sharing our story is worth it because God is big and all powerful and a healer. First, a healer in my own sin, my own doom and gloom attitude at a hard time (of course if our son had ACC we would be OK he would be loved and we'd give him all he needed!).. a healer of fear and anxiety to a physical healer. A healer of whats yet to come.
Ill never forget walking out of the doctors office on May 13th with Abby as we were holding hands, she's smiling, not a care in the world and I looked at her, thanked God for my two baby girls and told him if thats all he gave us they would be enough. If our son has whatever he has (since we knew so little at the time) that would be enough.
I pray I always have a heart of gratitude,
<3 Alisha
More information on DCC can be found
here
