By mom, Patrice
When my son, Benjamin, now age 6, was born, we were told in the delivery room that he had a cleft palate and probably Pierre Robin Sequence. They explained he had a full-sized tongue, but that his jaw hadn't grown properly, so his tongue had looped up into the nasal cavity causing a cleft palate. This also caused his esophagus and trachea to be malformed because they didn't get pulled up as the jaw grew forward. Pressure of his breathing was causing things to collapse. Even on his stomach, he struggled to breathe.
The next day, Dr. Arlen Denny (medical director, Center for Craniofacial Disorders) at Children's Hospital of Wisconsin came to see us and told us Benjamin was a good candidate for distraction. He had distracted older kids to remove their trachs, but Benjamin would be one of the first neonates in North America and Europe to undergo the procedure.
Dr. Denny also gave us the other options and their outcomes. Tongue-pinning would sew his tongue to his lip to keep it out of the airway while we waited for his jaw to grow, but this could take years. I talked to a mom whose child had managed to eat with the tongue pinned in a stationary position, but couldn't talk. The child was delayed two years in normal function. A trach would have similar results. We also could stay in the hospital for three to six months while Benjamin laid on his stomach, using gravity to help clear his airway, and waiting for his jaw to grow. None of these options would actually fix the problem.
Distraction mechanically made sense to us. When the jaw is moved forward, the tongue moves forward because it is attached to the jaw. We decided that not trying it would completely change his lifestyle and even if it wasn't a complete success, we wanted to try something.
Benjamin underwent the two-hour surgery at 6 days old. We were concerned about whether there was enough bone to put the pins in and were happy to hear his airway was stable and everything was in place.
After the surgery, Benjamin was very swollen. That was much more noticeable to us than the tubes and distraction pins. They waited two more days for him to recover before turning the pins for the first time. Our goal was to move his jaw 11-12 mm, but after they had moved it just 2-3 mm, the difference was amazing. His breathing tube was removed just four days later.
We were in the hospital about five weeks. They had wanted him to go home as a full oral feeder, but they've learned that's not a realistic goal. Most children are discharged taking some food by mouth and the rest through an NG tube. Benjamin was a total oral feeding by 3 months of age.
The distraction device was removed after about eight weeks. The difference in his appearance was unbelievable, and Benjamin being able to breathe, eat, and talk far outweighed the tiny scars on the side of his face. At first they looked like dimples, but they have faded as he's grown and now they're just little dots.
The other options allow you to learn to live with what you've got. You haven't fixed the small jaw. You've just grown enough to breathe, but you can never go out for sports, and forever will have trouble sleeping on your back, or have sleep apnea. You can also have issues with swallowing food and difficulty speaking, and pronunciation.
I'm glad we were at the right place at the right time.
The Cleft Palate Clinic is a Godsend in and of itself. We have a care conference at least once a year where all of his doctors and specialists come together and discuss his case. Trying to schedule care conferences is unbelievably hard and to have that type of management makes me feel good that all the doctors involved know what everyone else is thinking.
We had never been to Children's Hospital before this and were terribly impressed. Cleaning people would ask how he was doing. On a bad day someone would hand us a box of Kleenex. People we didn't even know would play peek-a-boo with Benjamin in the hallway. We had such great care throughout it all. I can't imagine not having done this.
I've worked in the medical field for 10 years and had taken time off when my children were born. Two years after Benjamin's surgery I went back to work and now work at Children's Hospital. I wouldn't work anywhere else.