Ankyloblepharon – Say what?

Flash, our third baby, was born in April of 2013. After going to the ultrasound to find out that he was in fact a he, we were on cloud nine. We’d already had one little boy, and we were thinking of all the fun ways that the boys could play together: wrestling, baseball, GI Joe.

After finding out that we were having another sweet little dude,  we received a phone call that made us stop and really begin praying hard. We were told that Flash had a single umbilical artery. On the phone, the nurse acted like it was no big deal. In fact, she was kind of flippant. I hung up, called my parents, and did the entire freak-out thing that parents tend to do when they get uncertain news about their children.

In the days that followed, Aaron and I did excessive research and reading and Googling (which we were told later by the doctor to NOT do since the Internet isn’t the most reliable of sources, sometimes).

We went in for several extra ultrasounds to check his heart and his palate. He looked great. All ten fingers. All ten toes. His heart didn’t have any holes. His kidneys seemed to be functioning properly. We breathed a little easier.

As his due date approached, we found out that he was footling breech. We went in for a check to see how he was positioned, and the doctor literally felt his foot when she did an internal exam. So, we sort of freaked again. We could handle a C-section if it was necessary, but the idea of the additional dangers of a prolapsed cord or waters broken too early had us on the mission to get him turned.

I did everything I could to turn him, and he did. I’m still not sure if it was what I did or if it was just what was going to happen. Either way, he turned and he was born and everything was beautiful.

The pediatrician in the hospital told us that we shouldn’t have him circumcised because of what he thought was hypospadias. There was a bit of a curve in that area, and the pediatrician suggested we see a pediatric urologist to assess that situation before doing anything. So, about a month and a half after Flash was born, we went to see Dr. P who actually diagnosed him with a condition called chordee. We could choose to do nothing, as Dr. P informed us that it wasn’t too severe. But, after talking to the doctor and thinking about how painful/embarrassing/difficult it may be for Flash to fix when he was older, we made the choice to go ahead and take care of things while he was small.

I had also noticed that there was a spot on his right eye where the eyelids seemed to have stayed attached. I asked the pediatrician about this, and she told us she’d never seen anything like this before. So, we were referred to a pediatric opthamologist. Dr. S was super cool and told us that Flash had a condition called Ankyloblepharon. She also told us that most pediatricians will only see something like this once in their career as it is pretty rare. (Also, many people with ankyloblepharon have the lid attachment more in the center of the eye. Flash’s is only on the outside corner.)

We set up a surgery to have this condition repaired as well since it is a birth defect and could affect his ability to see peripherally later in life.

Luckily for us and for Flash, Dr. P and Dr. S know each other and have worked together before. This meant that he could go in at one time to have both conditions repaired.

So what does all of this have to do with the single umbilical artery? I’m not sure. All of the doctors we’ve seen seem to say that the SUA isn’t necessarily connected to any other conditions. They checked him for the heart, kidney and palate issues because a higher percentage of babies seemed to have the SUA and one of those types of conditions. I guess research has been so limited on the SUA that they just don’t have clear information on what are connected conditions and what aren’t.

But I do find it interesting that Flash has had: jaundice, ankyloblepharon, chordee, tongue tie, and the SUA.

Today is the day before the surgery. Aaron and I are trying to get our ducks in a row to leave Miss Sassy Pants and the Animal with their grandmother as we travel to spend the night near the hospital. The surgery begins at 7 am, and we have to check in to the hospital at 5:30 am.

I’m most afraid of the moment they take him away from us and the fact that he’s going under anesthesia. I don’t know what reactions he may or may not have, and I can’t plan for his recovery. I don’t like not knowing how something is going to turn out, and I really hate not having a plan.

Have you ever dealt with SUA, chordee, ankyloblepharon or anything similar? Talk to me!

 

Tags: ankyloblepharon, babyflash, parenting, SUA, surgery