Retrun to 22q Stories

You are here

Sam came early! His announcement said, “He just couldn’t wait!” I was 32 weeks along in my pregnancy and my water broke! I held off 2 weeks in the hospital before going into labor. We had no idea while I was pregnant that Sam was going to have problems. Other than my preterm labor. He delivered, did pretty well and got to go home with us!! I am a pediatric nurse so our pediatrician just said, keep a close eye on him, I think he will be just fine. We took Sam home…about 3-4 weeks later we star ted having problems. He started choking on his feedings to the point I would have to give him back blows to clear his airway. He would turn blue with feedings, have apnea (stop breathing), and get him to eat more than 3/4 of an ounce without him projectile vomiting right back up as well as shooting out his nose. After making several calls to the doctors Sam got admitted for a swallow study, ph probe and sleep study. All was very abnormal. This lead the doctors to do an Echocardiogram and it showed that Sam’s aorta was on the wrong side along with other vascularity abnormalities. They rushed us via ambulance to Children’s Hospital to Omaha Nebraska where Sam had a CT of his chest and we discovered he had a Vascular Ring-he underwent closed heart surgery, a vascular ring resection. Due to the type of cardiac abnormality this caused the surgeon to consult genetics and they tested for the 22q11deletion. Sam was diagnosed at 6 weeks of age with the 22q11deletio n. He currently is tube fed for initial aspiration, failure to thrive. Currently doing pretty well with that. Has gone through lots of OT/PT for delays. Been dx with Anxiety disorder with secondary diagnosis of OCD, ADHD, asperger like tendencies which causes many behavior issues. We are currently working through medications that are helping considerably. He has also been diagnosed with a receptive learning disorder that the schools are working with him on. Sam is a wonderful little boy. He is FULL of energy and can’t get enough of sports! He loves baseball, soccer, HOCKEY, football etc. He loves to play and watch! He can’t wait to get outside. The Nebraska winter was LONG! He’s really getting proud of himself with his reading skills in school. He is getting pretty good at writing stories, too! Math is a struggle as we anticipated. He struggles socially and it’s something we have to work on daily. Music, he loves music!! Rock and roll-hard rock, which cracks me up that a child that his so wound up in side and anxious likes music that can drive me crazy sometimes!! Well, that’s our Sam! My husband and i have been through our ups and downs. It’s been challenging and rewarding. I’ve learned more from Sam than I have learned from anyone or any other experience in my life. I thank God for him.

Latest News

Upcoming Event

Spread the Word