Mikey S.

At 21 weeks pregnant we not only found out we were having a boy but our little boy would be born with a rare condition called Congenital Diaphragmatic Hernia. This means there was a hole in his diaphragm and his stomach and other organs were pushed to where his lungs are effecting his lungs. This point we were told that the chances of survival would be 5%. That weekend we did our research on CDH and we’re lucky to find an incredible doctor who specializes in his condition in St. Petersburg. So we had to move temporarily a month before Mikey was born to give him the best chance of survival. 

Mikey was born September 2020 unable to breathe and was intubated at birth. I may have glanced at him one quick second before he was wheeled away by the most incredible team of doctors and nurses.

On day 3 of life Mikey was put on the highest level of life support ECMO for 26 days and even had his first surgery at 4 days old to repair his hernia. During that time we found out Mikey has Pfeiffer syndrome as well which is craniofacial syndrome that effects Mikey’s skull, facial features and airway. At that point our team expanded to neurological, plastics, ent and more. 

Mikey stayed in the NICU for 7 months fighting for his life with multiple procedures and surgeries, including a tracheostomy, skull surgery, eyes, and so many more. During this time we still homeschool our 2 girls Maddie (13) and Mallory (12). It was also during COVID time so only one parent was allowed with Mikey at a time. At times the girls stayed with family so we could concentrate on Mikey. 

Mikey kept needing to be intubated and had what they said was a floppy airway. We first thought it was his tongue causing the airway issue so we sewed his tongue to his lip but Mikey’s airway issues were still happening. After multiple bronchoscope we realized a trach would help because Mikey was born without the rings in his trachea making his airway floppy. After a month after his surgery and all the training Mikey was finally able to go home. 

Our first ride home from the hospital was the longest 5 hours. At this point Mikey was on a ventilator and had multiple equipment monitoring his breathing and pulse. Most people have nurses when they get home to help them but due to Covid time we were unable to find help so it was just my husband and I. 

Three months after that we were at Mikey’s first check up with his team since returning. We were excited to show them how great Mikey was doing off of the ventilator during the day but still using it at night. After our appointment and back into our hotel, Mikey’s equipment malfunctioned and Mikey started not being able to breathe and coughing up blood. We were then airlifted back to JHAC where Mikey was treated and watched from his team for the next few days. 

Since then Mikey sees his team every few months to monitor many aspects of both cdh and Pfeiffer syndrome. He has had multiple surgeries and procedures as he continues to grow and will continue to be monitored. A common cold can turn into a bigger problem so we have to continue to be extremely careful. With girls going back to Public school this is extremely hard with school germs. With 

Mikey’s condition there is no set timeline on when his surgeries should take place it’s more about when his facial structure and how much room he has in his skulls determine when it is necessarily needed. As far as his tracheostomy that is determined on how ridged his airway becomes and also around 6 to 8 years old Mikey will need a major mid face surgery to help restructure his facial features. We continue to see many doctors often to keep a close eye on all aspects.

Mikey is now 3 years old and the happiest little boy. We knew with his time in the NICU there would be a lot of developmental delays and were told he could possibly not be able to do a lot of “normal” things like walk, eat by mouth and talk. Mikey continues to show us how strong he is and with a lot of hard work Mikey started to walk at almost 3 years old and he loves to eat food like pizza, cookies, fruit and all the toddler food. We are still working on talking but he is saying a few words like momma, daddy, bubba and Gaga (his sisters). Mikey loves cars, playing outside, Bluey and dancing. 

We recently had a extremely scary incident. On October 3 2023, Mikey woke up from bed like any normal morning. Mornings are usually rough. He gets stomach issues at night and sometimes it can cause airway issues. Mikey is monitored by us at night as we don’t have any help. At night Mikey’s trachea is suctioned multiple times as well as fed a few times at night. This night Mikey was not wanting to sleep and was off a heated machine that is hooked up to his trachea to give him humidity. When he woke up he was unable to breathe and as my husband was rushing to get him on the ventilator and as I was calling 911 Mikey went hypoxic hypoxia. When we arrived to St. Mary’s Mikey had a seizure. Mikey was not responding for 2 long days and woke up like nothing ever happened. After having pizza, cookie and ice cream (his 3 favorite treats) and was able to walk around the hospital, we were able to take him home. We then found out that the reason for incident was because he had a plug deep because he was off of the machine at night and no humidity was going to his trachea causing a blockage which made it hard for Mikey to breathe.