We have a wonderful, wonderful update.
This Thanksgiving we spent the day transferring Uriah to St. Louis Children’s Hospital. It was a busy day but a decision we are so glad we made. Uriah was 4 days old when he took his first big ambulance ride!
We transferred when our Neurosurgeon team gave a very elusive, negative prognosis and treatment plan. Basically, they felt there was too little brain tissue to bother inserting a shunt (and therefore relieving the pressure in his head). They felt the risks and common difficulties of a shunt were too high and would only recommend it if Uriah’s head got too large and difficult for us to care for. They said his brain was so underdeveloped that he was blind and most likely deaf and that he would have very little motor control.
Needless to say, we needed a second opinion. I have had months and weeks to research, read, and connect with families with similar diagnoses’ and I knew how beneficial a shunt could be to Uriah. I also knew that parents of babies with these sort of brain anomalies are often told that their children would would have the poorest quality of life with enormous difficulties.
I thank the Lord for my amazing husband! Within moments of the doctors leaving, Dalton jumped into action, planning how to send off MRI’s, and asking me who I knew we could connect with. By the end of the night we knew we had to transfer to St. Louis Children’s Hospital.
This afternoon part of the Neurosurgeon team met with us to discuss Uriah’s care.
And guess what?! After reviewing Uriah’s scans and examining him they say he does not have Holoprosensephaly (where the front part of the brain did not divide). They do not know why the last hospital gave him that diagnosis.They believe that his brain did in fact divide properly but that his severe case of Hydrocephalus compressed it.
They want to insert a shunt and believe his brain is very likely to “fluff up” or “sponge out” once the pressure has been relieved! And while his brain may never be fully formed like yours or mine and developmental delays and special needs are likely they see no reason for him to be blind.
I cannot tell you what this means to us. To leave behind a hospital that encouraged us to do nothing but manage the symptoms of Uriah’s pressure and enter one that believed a shunt would be very beneficial to him is absolutely … I have no words. (All I want to do is cry tears of happiness but that hurts my incision so I just sit in awe and thanksgiving and ponder all the possibilities our Uriah Boy has). 🙂
When we left the last hospital Dalton and I knew that it was a possibility to be given the same treatment plan in St. Louis. And we knew that if Uriah was meant to be blind, deaf, and benefit more from a lack of treatment than we would love him just as strongly. But we just *had* to know if the doctors were right. We just had to have a second opinion. ***We wanted his brain to be given a chance to “fluff out” and recover from the damage the blockage created.*** We wanted him to be given a chance.
My new mommy-heart is so full. There is no greater gift than being given a chance, both spiritually and physically, and we thank God for giving us both. I am thankful we were given the time to prepare, research, and connect with families with similar stories so we would know how to respond (all that bed rest proved useful in more ways than one!). I am thankful for a husband who is bold enough to demand second opinions and question professionals (I’m not so much) 😉 . I am thankful that Children’s accepted Uriah’s case and gave him the medical attention and examination he needed. I am thankful for a medical team who personally meets with us. And I thank the LORD for the better diagnosis. I was prepared to love a little boy with two life-altering diagnosis … to be told he has only one (and the relatively more minor one at that!) is something I never thought I’d hear. I honestly can’t believe it.
Thank you all for your prayers. We’re currently holed away in a hotel room and I am enjoying being able to finally put my swollen feet up and drink coffee in peace. We’ll be right back to Uriah’s bed tomorrow morning but for the moment we rest and smile little happy smiles to ourselves over the good news. We love our son so much, no matter what his diagnosis and abilities, but this news is truly refreshing.
As far as upcoming surgeries, Uriah’s TE Fistula (esophagus/trachea) surgery is being tentatively planned for this Monday (it was rescheduled when we changed hospitals) and then his shunt surgery will follow in the coming weeks after he has rested and recovered from the first.
We still have a long road ahead of us but this makes the difficulties so much easier to wade through. Is there anything better than a chance?
Love and blessings,