As a disability expert, my whole career has been spent giving parents advice. I’ve given advice on parenting, doctors, child development, school and resources to support them. I was confident working with families and helping them navigate the often crazy and overwhelming world of special needs. But when I was 34 weeks pregnant with my own child, I found myself on the other side of the situation.
My husband and I learned that our son, Jack, would be born with a cleft palate and micrognathia, or an undeveloped lower jaw. The extent of these facial differences wouldn’t be known until he was born. We met with doctors from our hospital’s maxillofacial clinic, otolaryngology department and neonatal intensive care unit (NICU), to name just a few. Each appointment was more overwhelming that the previous one. Even though I knew what to expect from a clinical perspective, nothing prepares you for what comes when you are the parent.
An emotional time
Jack was born on February 12, 2016. He cried immediately, which was a relief, but it still was a whirlwind of emotions and exhaustion. After the first night, his care team determined he needed to remain on his stomach so he could breathe. After three nights, the team sent Dr. Carolyn Rogers-Vizena of the Cleft and Craniofacial Center at Boston Children’s Hospital to talk with us about interventions Jack would require. Dr. Rogers explained that Jack would need to be moved to Boston Children’s and would require treatment for his micrognathia immediately. We would deal with the cleft palate at a later date.
Jack had what is known as Robin sequence, a combination of congenital facial differences that includes micrognathia and, often, cleft palate. His case was severe and affected his ability to breathe on his own. Dr. Rogers explained the two surgical options, a tongue-lip adhesion (TLA) or mandibular distraction. As a first-time parent with a 5-day-old infant, both procedures sounded horrific.
Treatment for Robin sequence
The next week is a blur. We met with countless doctors from genetics, plastics, otolaryngology, ophthalmology and gastroenterology and weighed our options. During that time, we met Dr. Cory Resnick, who would repair Jack’s jaw. He calmly explained to us that mandibular distraction would involve breaking Jack’s jaw and moving it with a metal, corkscrew-like device until his jaw no longer obstructed his airway. Although TLA was less invasive, Dr. Resnick believed that it might not be effective enough.
I remember being exhausted and unable to really comprehend what he was saying. I asked Dr. Resnick, “If this was your child, what would you do?” He said he would do the distraction procedure and was confident that it could help Jack. Putting all your trust in a person, who is going to actually change your child’s face is a difficult thing to do. I had always advised parents that I worked with to avoid the Internet and not research information that could be inaccurate. I took my own advice and put my trust in Jack’s doctors and let them be my best resource.
The best advice
Jack’s surgery to treat Robin sequence was a success and he has had two more surgeries since that time, both of which were also successful. He’s thriving and is becoming such an amazing kid. We are blessed to have amazing family and friends who have helped us immensely. We are also blessed to live close to the best children’s hospital in the world.
The truth is that nothing can ever prepare a parent for this and no one piece of advice is better than the other. No professional experience or advanced college degree will make you any better prepared. The best advice I have now is to put your trust in the angels in scrubs, ask questions, find a support system and always have a positive outlook.
Learn about the Cleft and Craniofacial Center.