Alex is totally Jawsome!

The story of Melissa

On April 18, 2013, my husband and I drove to the hospital for a scheduled C-section ready to welcome our 3rd son to our family. Big brothers Charlie and Ben could not wait to meet their new baby brother. We walked into the hospital just as we had done twice before ready to meet the little boy who would complete our family. My pregnancy was normal with no completions so I expected to give birth to a happy and healthy baby boy. Alex was a happy baby born a whopping 9 pounds 4 ounces and was 21 inches long. He was born with a tiny little chin that was adorable and everything about him was perfect. I remember saying to my husband after the nurses showed me, Alex, “where did he get his cute little chin from?” Little did we know at the time, this cute little chin would be the reason for his diagnosis of Pierre Robin Syndrome. After struggling to breathe for three-plus hours, Alex needed to be transferred to the NICU at Cincinnati Children’s Hospital and this is when our journey with CCHMC began.

Alex spent 33 long days in the NICU at CCHMC. During this time, we learned more about PRS (Pierre Robin Syndrome also called Pierre Robin Sequence). Pierre Robin sequence is a condition present at birth, in which the baby has a smaller than normal lower jaw, a tongue that is placed further back than normal, and an opening in the roof of the mouth (cleft palate). This sequence of features can lead to difficulty breathing and problems with eating. All of which Alex was experiencing. At just 13 days old after a sleep study had shown difficulty breathing while sleeping (OSA), Alex had jaw distraction surgery. Both his upper and lower jaws were broken and pins were placed. Every 12 hours, the pins were rotated and new bone would grow to help open Alex’s airway. The rotation of the pins lasted 16 very long days and then Alex underwent another surgery to have the pins removed. This surgery performed by Dr. Gordon and his team saved Alex’s life and he was finally able to come home and meet his brothers. Alex has had several more surgeries to help with his speech development. He has had several sets of tubes, a cleft palate repair at 11 months old, and pharyngeal flap surgery when he was 3 years old along with several dental surgeries. Although the pharyngeal flap surgery tremendously helped improve his speech, it made his obstructive sleep apnea so bad he needed to start wearing an auto-pap machine at night to help him breathe. At 3 years old, he took this obstacle like the champion he is and continues to use his auto-pap machine every night.

Several doctors at CCHMC follow Alex; currently, genetics, ophthalmology, ENT, audiology, speech pathology, plastic surgery, dentistry, and the sleep clinic see him. We have recently added orthodontics to the list. I asked him one day as we were driving to the hospital for one of his appointments if he ever gets tired of going to all of his doctor appointments. His response was, “No mommy, I love ALL of my doctors because they help me!”
Alex is a typical almost nine-year-old boy who loves riding his skateboard, shooting hoops, or playing kickball in the front yard with his big brothers Charlie who is 15, and Ben who is 11. Alex plays on a select soccer team, a basketball team, and swims on a swim team with his 2 big brothers. As Alex’s family, we are so proud of his determination to be the best he can be whether it is facing a challenge head-on medically, on a sports field, a basketball court, or trying to with the race during a swim meet, Alex’s drive and determination are unstoppable which is the reason he has come so far in life and why we think he is totally Jawsome!