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We didn’t find out that Caleb had the 22q deletion until after he was born. My pregnancy was normal without any complications. All my tests came out normal. I went into labor right on my due date. The only complication of delivery was that Caleb didn’t drop, so the nurses had to push him down by pressing on my stomach. Twelve hours after he was born he started to show signs of respiratory distress. He wouldn’t eat and his skin started to get a blue-ish tinge. He would take very fast gasping breaths. The nurses took him back to the nursery. About an hour later the doctor came into the room to tell me that Caleb had been transferred to the NICU and that he was going to be transferred to the local children’s hospital. He told me that Caleb had some defects in his heart. He was diagnosed with an interrupted aortic arch, ASD and VSD of the heart. He was transported to Sunrise Medical Center to their NICU where they ran more tests. It took about a week to get the results of the chromosome test back. The doctors tried to prepare us for the worst. They knew he had a syndrome, but they were not sure if it was “DiGeorge” or Trisomy 13 or Trisomy 18. We were terrified we were going to lose him as the trisomy syndromes are generally fatal. The first week of his life was the most terrifying for my family and I. Every time my husband and I saw a doctor it was to tell us something else was wrong with Caleb. He had a grade 2 kidney reflux, his left eye was red and swollen so much the doctors thought he might lose the eye. He also has an extra rib as well as a hemi-disk in his back. The doctors arranged for Caleb to be transferred to Children’s Hospital Los Angeles for surgery to the eye. They did not have the equipment to do the surgery in Las Vegas, where he was born. Once we arrived in L.A they checked his eye and found nothing seriously wrong, only inflamed blood vessels. They decided to perform the heart repair surgery there. After his recovery from heart surgery we were transported back to Las Vegas. Caleb remained in the hospital for another week and a half due to feeding difficulties. He finally learned to drink from a bottle and no longer needed a feeding tube and we were able to bring hime home. He was in the hospital for a month and a half after he was born. Now he is doing excellent. He had to have a follow up surgery due to scar tissue in his aortic arch. He does have some delays in his milestones. He isn’t yet forming words, but we are working on sign language. He also is a little smaller than other 3 year olds. Every day we work towards helping Caleb achieve. He is currently enrolled in early childhood special education and we work with him daily to help his expressive communication skills. He is truly a miracle baby and we are very happy and blessed to have him in our lives.

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