Help Rowan Overcome Airway Challenges

Our son Rowan was born in early January of this year. When he was born, we discovered he had a cleft palate. At that time, we were unaware he was also born with PRS (Pierre Robin Sequence). At 6 weeks old, Rowan was rushed to the hospital due to respiratory distress, and he was transported to Seattle Children’s. We found out he had Pierre Robin Sequence, Micrognathia with tongue-based airway obstruction, cleft hard palate, severe obstructive sleep apnea, and laryngomalacia.

We were recently at Seattle Children’s for 7 weeks to start treatment with an OAP, which is an orthodontic airway plate. The airway plate helps keep his tongue out of his airway. While starting the treatment, that is when we found out he has severe obstructive sleep apnea and laryngomalacia. Most of the time, the treatment for laryngomalacia is time, but for Rowan, it will be a Supraglottoplasty, which is a surgical procedure used to reshape or remove tissues in the upper larynx (voice box) to improve breathing.

Rowan will also be having a GJ surgery. Due to his airway complications, he is unable to eat orally, and he couldn’t tolerate a normal NG tube.

We are currently home for a few days before we are admitted back to Children’s for the Supraglottoplasty and a GJ tube surgery.

We were not prepared for any of this and have been very taken by surprise. With that being said, Chad and I are currently dividing and conquering. One of us is at home with Nevaeh, our 4-year-old, while the other is in the hospital bedside with Rowan.

For these next two surgeries, we will more than likely be at Children’s for 3 weeks or more starting the week of the 14th of April.

At the moment, we are hopeful that the airway surgery will help, but if it does not, the only other options are time while in the hospital or a tracheotomy.

Due to being in the hospital for 7 weeks and looking at another long stay, we are having a hard time handling the cost of being up at the hospital. Thankfully, most of the medical bills are covered, but not all medical equipment and supplies are covered, and we are spending a lot of money out of pocket for gas to go back and forth to Children’s weekly. That way, one of us is continuously with him, as well as the cost for food while someone is with him.

Chad and I are asking for help while we currently go through this new stage of life.

If you cannot donate, we fully understand. We ask that you share as well as keep our little boy in your thoughts and prayers while we go through all of this!

Thank you to those of you in advance!