Noah’s Journey

At 29 weeks pregnant, Noah’s family learned he had a very serious heart defect called Tetralogy of Fallot. This condition causes poor oxygenated blood flow from the heart to the rest of the body. Unfortunately further testing also revealed that sweet baby Noah also had Down Syndrome. On July 27, 2015 he was born and thier lives changed forever!

Because of Noah’s serious heart condition, he was quickly whisked away to the CHOC Children’s NICU. His mother was only able to give him a quick kiss in that short moment. Shortly after they received Noah into the NICU, his multidisciplinary care team also diagnosed him with Apert syndrome, a genetic disorder that causes certain bones to fuse early. For Noah, that included his skull, fingers, and toes. Baby Noah’s 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.

Noah’s had his first surgery just three days after he was born. He was finally able to come home after thirty one days. Unfortunately Noah experienced respiratory complications which lead to him having emergency open heart surgery at just two and a half months old.

Just days before Christmas in 2015, Noah had to be admitted to the CHOC for respiratory failure. He had to have a breathing tube placed and as they were inserting the tube his heart stopped. The doctors fortunately were able to get his heart pumping again and the breathing tube successfully in place.

After 19 days of being sedated and many scary moments of thinking Noah wasn’t going to pull through, the doctors recommended that Noah should undergo a Tracheotomy. A small opening would be made in his windpipe and a tube inserted to help him breathe. Making a decision like that was one of the hardest decisions his family has ever had to make, however, it also ended up being the best decision of their lives because after that Noah started to thrive! He gained weight and became strong enough for his next open heart surgery at 10 months old. Noah’s mother says, “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.”

After surgery Noah continued to flourish and grow! He started rolling over and actively playing. He has not stopped smiling! His amazing progress allowed his family to prepare for his next major surgery, a frontal orbital advancement. This surgery would reshape his skull and forehead that fused too early due to his Apert syndrome. With the expertise of his neurosurgeon and his plastic surgeon, this surgery also proved to be a success! Noah’s brain can now continue to grow.

Earlier this year in February, 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 August, he had his second surgery to separate the remainder of his fingers and toes. In between his surgeries, Noah has had several other hurdles which included multiple stays at CHOC due to reoccurring respiratory infections, viruses and Heart Cath procedures. Even with all his hurdles, he continues to smile and enjoy every day to it’s fullest being a little inspiration for his family!

Noah’s cake was provided by Sugar Angel Kara Paulino in Chino, California. Noah’s mom shared, “I can’t express how thankful I am for Icing Smiles’ help in making Noah’s 2nd birthday extra special. He had an amazing day filled with smiles, laughter and love. We are grateful for you!!”

To keep up with Noah’s Journey visit his Facebook page: @noahstapletonsjourney.