My Superhero and His Story
Written by Karen Stapleton
When I was 29 weeks pregnant with Noah, we learned that he had a serious heart defect called Tetralogy of Fallot which causes poor oxygenated blood flow from the heart to the rest of the body. After further prenatal testing, we learned that he had Down Syndrome. On July 27 2015, our lives changed forever- Noah was born! Because of Noah’s serious heart condition, I was able to quickly give him a kiss before he was whisked away to CHOC Children’s NICU. Shortly after they got him to the NICU, Noah’s multidisciplinary care team also diagnosed him with Apert syndrome, a genetic disorder that causes certain bones to fuse early. For Noah, that was his skull, fingers and toes. His fingers and toes were webbed (Syndactyly) and his coronal sutures (part of his skull) were fused together which would not allow enough room for his brain to grow.
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Noah’s first surgery happened just three days after he was born, unblocking a portion of his intestine as well as placing in a G-tube (feeding port) with the anticipation of multiple surgeries, multiple breathing tubes and days/ weeks of sedations that would prevent him from oral feeding. Thirty-one days after he was born, Noah finally came home.
photo courtesy of Noah Stapleton's Journey
Noah had respiratory complications, which lead to an emergency open heart surgery at just two and a half months old. Just days before Christmas in 2015, Noah had to be admitted to CHOC for respiratory failure. He had to have a breathing tube and as they were inserting the tube, his heart stopped. The Dr.’s were able to get his heart pumping again and the breathing tube successfully in place.
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After 19 days of being sedated and many scary moments of thinking Noah wasn’t going to pull through, the Dr.’s recommended that Noah should undergo a tracheotomy, where a small opening is made in his windpipe and a tube is inserted to help him breathe. Making a decision like that was one of the hardest decisions we’ve ever had to make in our lives but ended up being the best decision of our lives. After that, Noah started to thrive. He gained weight and became strong enough for his next open heart surgery at 10 months old.
photo courtesy of Noah Stapleton's Journey
All of this is a lot for a little baby to go through before his first birthday, but Noah has always surprised us and pulled through. Celebrating his first birthday meant more than celebrating his first year of life; it meant celebrating every fight Noah had won over the last year, and it meant appreciating a milestone that at times we thought we might never reach.
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Noah continued to flourish and grow! He started rolling over and actively playing, and he has not stopped smiling. His progress allowed us to prepare for his next major surgery, a frontal orbital advancement, to reshape his skull and forehead that has fused too early due to Apert syndrome. With the expertise of his neurosurgeon and his plastic surgeon, Noah could put another successful surgery at CHOC on the books and his brain could now continue to grow.
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In between his surgeries, he had several other hurdles which included multiple stays at CHOC due to respiratory infections, viruses and Heart Cath procedures. CHOC became our home away from home. In February of 2017, Noah had his first surgery to separate his fingers and toes (syndactyly release). This is typically a two phase process. He had casts on both arms and both legs but he was still able to make the best of the situation. In the beginning of February 2018, he had his third surgery to separate the remainder of his fingers and toes.
photo courtesy of Noah Stapleton's Journey
Today, a month away from him turning 3, Noah is reaching huge milestones almost on a weekly basis. He is able to crawl and is working hard on his core muscles so soon he can sit up and eventually walk. He is eating by mouth more and more on a daily basis which makes us one step closer to getting the G-Tube (feeding port) removed. Noah’s lungs have healed tremendously allowing him to not require his ventilator very often. It has also allowed us to cap off his trach periodically throughout the day so he can practice breathing as if he doesn’t have a trach. He is getting closer and closer to getting his trach removed permanently. His gross motor skills are advancing so much that we were told he is high functional. Currently, Noah receives 5 days of therapy, a mixture of physical, occupational, speech, and feeding therapies.
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To date, Noah has had 14 surgeries/procedures. He has more hurdles and additional major surgeries (heart valve replacement- at 4 yrs old and mid-face advancement at 4-5 years old) ahead of him, but even with how much he’s fought, he continues to smile. He’s not cranky and he doesn’t cry. He’s enjoying every single day he gets to be here- that’s the life he has taught me to live.
photo courtesy of Noah Stapleton's Journey