I don’t know if you’ve ever seen a baby in a CT scan machine, but it has to be one of the cutest tests I’ve ever seen Ryan get. There was a tiny little place for his head… no crying… and lots of smiling at mommy.
We left the house before the sun rose to get downtown for an early, early morning appointment. First we headed into the CT scan and then ran upstairs to meet with the neurosurgeon for the results (I love digital technology!).
The summary is that an ultrasound done the night before Ryan was discharged showed the ventricles in his brain responsible for creating and storing cerebral fluid were enlarged. Dr. D was concerned about *hydrocephalus so sent us to today’s consult.
*hy·dro·ceph·a·lus (hīˌdrō-sĕfˈə-ləs) or hy·dro·ceph·a·ly (-lē)
noun
A usually congenital condition in which an abnormal accumulation of fluid in the cerebral ventricles causes enlargement of the skull and compression of the brain, destroying much of the neural tissue.
(www.yourdictionary.com)
The neurosurgeon showed me the CT scan and I could visually see the difference in the size of the ventricles from a CT scan taken at birth and the one today. There is also some fluid surrounding Ryan’s brain. The neurosurgeon did some cognitive as well as hands on testing of Ryan and concluded that he has something called hydrocephalus ex vacuo. This is basically when hydrocephalus occurs as a result of an atrophy or injury to the brain. It is an effect rather than a cause.
While terms like ‘brain atrophy’ and ‘hydrocephalus ex vacuo’ sound scary, they are actually good news for us today. Dr. D explained it is typical for children with congenital heart defects(CHD) to have a measurably smaller brain than a healthy child. The theory is that CHD kids have possibly less blood flow and oxygen going to their brain starting in utero and therefore their brain does not develop at the typical rate.
When this happens, the ventricles compensate for the extra space by filling it with cerebral fluid. Dr. D assured us that this does not have definitive ramifications for cognitive abilities. There is no way to test what Ryan’s IQ would’ve been without his CHD, but we do know the infant brain is resilient. Synapses are still forming and will find routes to where they need to go as long as there is proper stimulation.
Therefore, the course of therapy is plenty of playing, interaction and family time…. all things we are giving Ryan now.
We still don’t know why he started spitting up two weeks ago (the only symptom correlating with hydrocephalus) so we will consult with GI to see if it might be his reflux acting up. Babies who have nasal gastric tubes typically have reflux since the tube does not permit the stomach to close. One of my big goals for Ryan is to have him off the feeding tube as soon as possible (knowing that asap will take months). Then perhaps he will no longer have this darn reflux.
I am tired and rambling so I will close with a big thank you for praying so faithfully for our family.
(The neurosurgeon started the explanation by pointing to a picture of Ryan’s CT scan and saying, “This is his brain.” I couldn’t help but ask him, “Do you ever want to say, “And this is his brain on drugs?” He chuckled and said, “No, but I think it every time!”)
(c) 2016 Leighann Marquiss
Comments (15)
Leave it to you to find the funny in every situation. You definitely have a wonderful outlook on life. God has been good to you in that way. We brought Ryan up to our church tonight for prayer and I am happy to hear that things turned out as they did. He will turn out very smart having you for a mommy because you always interact so well with your children.
God is continually good.
Keeping you in our prayers daily.
All our love.
Leighann, you crack me up with the “this is your brain on drugs” question! Shows that you are taking this all in stride. I know some children with a hydrocephalis diagnosis, and I think they are amazing kiddos.
I am so glad they didn’t put Ryan out with anesthesia for the cat scan! They did this to my son, and it was very traumatic waking up from.
*fka anonymous
Glad all went well. Natalie and Ainsley will have him playing and interacting in no time.
He is so cute. Love you all and praying for you daily.
prayers for your family still coming your way from me
God is so AMAZING! PTL for the good results of the head CT. Praying for the reflux issues to clear soon and it just be as easy as pullling the NG tube.
I think it is so FUNNY you asked the doctor that question..Good for you for asking and OUTSTANDING for him for having a sense of humor.
Hi there! So happy things went well for you guys!!! My little lady has had enlarged ventricles since in utero, while they also thought she had a rare brain defect, she does not. Amen! In any event, she has been followed since birth for the enlarged ventricles and the excess fluid she has around the brain. Our neurosurgeon said it’s very common for young infants to have excess fluid on the brain that eventually absorbs. She is hopeful that is the case for our wee one and so are we. While her head circumference is off the charts, she is following her own normal growth curve which is very important. She’s not lethargic and her soft spot is always considerably sunken in, both good signs. I know your situation is different than ours, but I just thought I would share my experience with you… You guys are continually in my thoughts and prayers! So glad Ryan is home!!!
Regards,
Samantha
I can relate to Ryan on this one. I have something called Cavum Septum Pellucidum where I also have fluid in my head/brain. Where my soft spot was supposed to close in with tissue, it closed in and has fluid instead. Gives me horrible headaches. Sounds like this form of fluid that Ryan has is better news than what it could have been, continually praying for him.
You have a blog award waiting on you to claim my friend!
Praying for Ryan!
You are one amazing Lady!! Cont to pray for Ryan AND the family.
Love and Prayers,
Paula
Ryan is amazing…just like his amazing mommy!
God just keeps bringing you both through one thing after another…and it appears that both of you can still smile…and you can even joke! Praise God!
I long for the day when this little guy is able to run around like other toddlers and play.
I am so glad he is home now and will have the stimulation of his older sisters…and mom and dad full time.
I will keep praying for you all.
Love, Linda @ Truthful Tidbits
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Hey- Whew! I think Ryan’s new name should be… SUPER RYAN!
Is he spitting up a lot? Do you think he might have a food allergy? In hindsight with our second she was spitting up a lot and I was eating a lot of peanut butter crackers at the time. Just a thought that it might be something semi-normal.
So my cousin is a hydrocephalic, Of course you have the pros there, but if you ever want to talk with my Aunt. My Aunt and cousin were the first to have an in utero -surgery , they were on the cover of LIFE back in the 80’s. she knows what it is like to be a guinea pig too. ((HUGS))
So glad I found you! What a miracle baby. Our daughter Eve was diagnosed at 2 days old with her CHD…she is doing remarkable today (just turned one year). I was so interested in your docs comment – they always have to remeasure my daughter’s head since it’s so small. She is on target developmentally, but it makes me want to keep on top of it! Hope to get to know you better, Annamarie, 1in100 on Facebook (1in100.org)
So glad to hear everything went well. Sending Ryan many many many Hugs:)
thanks for keeping us all so updated! we are praying for you constantly and it helps to know what your days are looking like!