I am a momma to a 8 month old with CHARGE syndrome. We found out that he has CHARGE syndrome a few days after he was born, after doing genetic testing while he was in the NICU. Our journey has been anything but easy but he never fails to make me see that even in hard times there is always something to be happy about! From three months in the NICU, countless visits to the hospital and emergency rooms, to all the surgeries he has had to endure he comes out the strongest and happiest boy I know.
When Walker was born he was immediately taken to the NICU, where they attempted to give him a bottle at 2 days old. He wouldn’t take to it – he had no swallowing ability. After a swallow study we found out that he aspirates. due to being unable to take feeds by mouth. An NG tube was placed and he kept that in until he was about 2 months old. We then decided that a longer term option would be best for him and he got a g tube. I am so incredibly thankful for feeding tubes, because without them my son would not be able to get the nutrition that he needs to grow.
