Updates on Ethan

Thanks to everyone who had us in your thoughts and prayers yesterday as we met with the plastic surgeons at Children’s Hospital to discuss Ethan’s reconstructive surgery.

Here’s a brief update; keep in mind, a lot of the surgery scheduling will depend on the severity of cleft, and we won’t really know that until our little guy is born. This is just our “best guess”.

A week or two after he’s born we’ll go to CHOP so the doctors can make a full evaluation and schedule surgeries.

If he has a full cleft lip that runs up into the nostril (which, from the ultrasound, we think he does), they’ll do a two-step lip repair. At three or four months, they’ll perform the first surgery which will connect the cleft in the nostril, essentially creating a partial cleft. After about 3 more months, they’ll perform another surgery to repair the lip fully. During the first surgery, an ENT (ear, nose and throat) physician will also install tubes in his ears since children with cleft palates are prone to fluid buildup and ear infections.

The palate repair is a much more involved procedure and won’t happen until he’s a year old (they wait because a lot of facial growth happens that first year). Finally, they install a bone graft in the gum around five or six years old so that the adult teeth will have something to be anchored in. They occasionally perform more cosmetic surgery into the teen years, but that really just depends on the scope and severity of the facial deformity.

Feeding and speech are the two major concerns for a child with a cleft palate. Breastfeeding will probably not be an option; we’ll most likely be using a special bottle with something called a pigeon nipple that helps increase the flow since children with cleft palates have a much harder time creating suction. (Which means more gas and most likely more fussiness.)

The really reassuring part is that we’ll be meeting each year with the entire cleft palate team at CHOP for an annual evaluation of all areas of his development. They truly have been wonderful to deal with and have lived up to every ounce of their reputation.

So, probably the next bit of news you’ll read about our little guy will be a birth announcement… Stay tuned, August 22nd! (If Jess had her way, it would be tomorrow.)