From Taylor and Valerie:
"We brought HT to Dell Children's for a swallow study September 14th and did not leave for 18 days. He has struggled with feeding since birth, and the swallow study revealed pretty severe aspiration, which left doctors baffled as to how he was continuing to gain weight and show no signs of illness. Since then, he endured study after study searching for an anatomical explanation for this, and when nothing was found, fear quickly set in that something neurological was going on.
An MRI confirmed abnormal brain development that was missed by the NICU team when he was born due to its rarity. So rare in fact, that it affects less than 1 in 250,000 births. So rare, that not a single doctor or specialist at this award-winning pediatric hospital has treated a single patient with it. It is so unlikely for two parents to pass on the recessive genes that cause this that standard genetic counseling would not even have caught it. So now we prepare for life caring for a child with Joubert Syndrome.
The past two weeks have been the most difficult time of my life, and that's following a difficult pregnancy and NICU stay. HT will be eating via feeding tube for the foreseeable future in order to protect his airway with hopes that therapy will eventually allow him to transition back to bottle or spoon feeding. The range of symptoms and the severity of those symptoms are so broad for Joubert Syndrome that nobody can tell us what we can expect for HT's life. I have had to quit my job, which I truly enjoyed, in order to focus on daily therapy that will give him the best chance at reaching his milestones. We are heartbroken, angry, fearful, and exhausted. We have grieved the loss of experiences we realize we may never have, worried about the task of caring for our son and keeping him healthy, and have sobbed wondering whether he will have friends or if we will be excluded or live in isolation due to his potential disabilities. We also understand it can be hard for others to know how to approach these situations, and that's okay too.
We are understandably frustrated with God at this time, and why, with such minuscule odds, he chose this path for our family. Speaking of family, we are so grateful for our parents, who have made long drives to be here with us throughout our hospital stay and beyond. And to the other family members and friends who already know about this and have done what they can to comfort us during this time - you are all amazing. We ask for prayers for us and our precious baby, and hope that no matter what his future holds, that the world will accept him and love him as much as we do.
For now, we are just so happy to be back home with Kitty and Shipley and are beginning the process of accepting and settling into our new “normal".”
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