Sunday, June 7, 2009

Cleft Palate Check

"Oral-facial clefts are birth defects in which the tissues of the mouth or lip don't form properly during fetal development. In the United States, clefts occur in 1 in 700 to 1,000 births, making it one of the most common major birth defects...

Oral clefting occurs when the tissues of the lip and/or palate of a fetus don't grow together early in pregnancy. Children with clefts often don't have enough tissue in their mouths, and the tissue they do have isn't fused together properly to form the roof of their mouths...
A cleft lip appears as a narrow opening or gap in the skin of the upper lip that extends all the way to the base of the nose. A cleft palate is an opening between the roof of the mouth and the nasal cavity...

Kids with a cleft lip or palate tend to be more susceptible to middle ear fluid collections, hearing loss, and speech defects. Dental problems — such as missing, extra, malformed, or displaced teeth, and cavities — also are common in kids born with cleft palate..."

--information taken from

What does this have to do with me?

Our oldest, Amelia, was born with a cleft palate (soft palate only). We had no idea she had any health issues until two days after she was born and had been struggling with nursing, her pediatrician discovered a tiny hole in the roof of her mouth, way in back by the throat. This meant pumping and feeding the milk to her in special bottles, as she couldn't create a vacuum to suck on a regular bottle. It also meant lots of trips to pediatricians and specialists in the cities. It was decided that she needed to have it repaired, which she had done at six months. The surgery lasted a few hours, and included ear tubes. She spent a night in the hospital, and a few weeks recovering, which meant being fed by dropper, no bottles or nuks. Since the repair, she has had two more sets of ear tubes put in, and is in speech therapy for related speech issues. She also has to see a team of specialists once a year to evaluate her entire ear, nose, throat, mouth area. We had her latest appointment last week, and want to share the most recent info with our friends and family.

1) Although speech therapy has made a huge difference in her sound placement and ability to pronounce consonants, the speech therapists were able to notice air escaping through her nose when it shouldn't be. This most likely means at least one more surgery within the next 2 years to further close off the throat from the nose. As we had been told from the start that she would most likely be done with surgeries after the initial repair, this was extremely discouraging news.

2) She's been battling a double ear infection for 3 weeks. The first round of antibiotics took care of the right ear, but a second round has still not cleared up the left. She has fluid built up in her tube, and is now on drops 3 times a day to try to flush it out. The poor girl is play-acting ear infections on all her stuffed animals now...

3) She has a cross-bite, which will mean a palate expander within the next few years, along with braces.

4) A flap of skin between her two front teeth needs to be snipped out at some point. Right now it gives her an adorable little space between her front teeth, but I suppose she can't have that forever.

5)The hearing specialists would like to have her hearing tested twice a year.

All in all, it was a very long day, starting at 6 am to drive 2 hours to the cities, 3 hours of meeting with a dozen specialists, a 2 hour break for lunch on a college campus with nothing for two small children to do, another half hour waiting for our evaluation meeting, then sitting through an explanation of all that is to come. After running errands in the cities, we finally got home at 6 pm.
I'm trying really hard to be positive, and recognize that we are lucky not to be going through multiple surgeries for a cleft lip or hard palate, but I still hate to think of my girl going through more poking, prodding, surgeries, etc...not to mention the expense now that our health coverage is definitely lacking. For now, I need to focus on continuing to work with her on speech, and worry about the rest when the time comes. I also get so tired of talking to people about cleft palate/cleft lip and the comments about how "gross" "disgusting" "ugly" etc. that is. Our daughter could so easily have had a cleft lip as well, and it would be heartbreaking to know that people thought those things about our precious girl. So please remember that a child with cleft lip is just as loved and cherished as one with a "perfect" face.

1 comment:

  1. Excellent post on explaining the cleft palate. My 5 year old was born with a midline cleft in the soft palate. She has only had to have one surgery to repair the cleft, and it was successful. But she will be continuing in speech therapy for a very long time. and