September Has Been Craniofacial Acceptance Month

I have been meaning all along to have a page where we explain a bit more about facial clefting in general and Simon's cleft in particular, so I will squeak it in under the wire here right at the end of September. I will continue to add to this page as I find out more, and as Simon's journey progresses. Let's start at the beginning:

What is a cleft?

A cleft of the lip and/or palate occurs very early in pregnancy, between 7 and 11 weeks after conception. The face and head form from back to front, normally meeting in the middle and forming the two lines under the nose and the raised ridge running down the center of the palate as they fuse. If the timing is off for some reason, the lip and/or the palate fail to fuse completely, and the resulting gap is the cleft.

Simon was born with a complete unilateral cleft lip, meaning the gap extended into his nostril, and a complete unilateral cleft palate, meaning the gap in the palate runs all the way from his gumline in front, through his hard and soft palate, to his uvula in the back.

What causes a cleft? Is it genetic or environmental, or just random?
The causes of clefting are only partially understood. In some cases it runs in families, and some ethnic groups have a higher incidence of clefting, but most of the time there is no family history and no connection to any other health problems. There are also some environmental factors which can increase the risk, such as maternal smoking, certain medications and high exposure to pesticides, but again most of the time it is just a random thing. We were completely surprised by the diagnosis, since we have no family history on either side, and I was extremely careful during the whole pregnancy, doing everything "right."

We didn't realize that clefts are the most common birth defect, affecting one in every 600 births in the U.S. We all know people affected by clefts, but most of the time don't realize it because of the wonderful success of repairs, which are performed so early most of us have never seen an unrepaired cleft lip.

Simon's timeline so far:

December 19, 2009:
19 week ultrasound reveals cleft lip and probable gumline involvement. We can't tell anything about the palate until birth.

February-March 2010:
Interview 3 cleft teams and select RUSH University Craniofacial Clinic

May 6, 2010:
Simon is born, and we see that he has a complete cleft lip on the right side, and a complete cleft palate, which means he will not be able to breastfeed, since he can't create a seal and get suction.

May 20, 2010:
Simon's first cleft team evaluation

May 25, 2010:
Remove a tooth that is erupting in the cleft site of the gumline

May 28, 2010:
Begin nasoalveolar molding (NAM) treatment

August 5, 2010:
Lip, nose and soft palate repair surgery, ear tube placement (age 13 weeks)

April 20, 2011:
Hard palate surgery and soft palate revision

TBD, 2017-2019:
Bone graft to complete gumline

More information to come...

Out and About

September is just about the best month of the year in Chicago. It's been strangely hot here all summer, so we have really been enjoying the great early fall weather. The first three months we didn't really take Simon very many places with lots of people because we didn't want him to get sick before his surgery. Now he's free to pick up as many germs as he wants. Here are some pics from the last month, visiting the Botanic Garden, the farmer's market, Moody's patio and the zoo.

Rolling over

Aunt Birdie says that rolling over might be the most boring of the important milestones, and I can't argue with that. Still, our brains are so soft from sleep deprivation, we found it pretty exciting when we accidentally captured Simon's first time rolling from front to back on video. Thanks Teta for the toy phone which is so mesmerizing it made him roll over without hardly realizing it.

My best friend, Towel

Simon loves to play with dishtowels these days. We use them as burp cloths and he keeps grabbing them off our shoulders to keep for himself. He always looks like he won the lottery when he gets a hold of one. It seems to help him get to sleep for naps to have one next to or over his face. Then of course I have to move it away once he falls asleep because babies are not allowed the risk of blankets, pillows or stuffed animals until they are at least a year old.

4 months

Simon had his 4 month pediatrician visit yesterday. He's doing great overall. The only little hiccup is that his eating has not been back up to the levels he was at before surgery. Partly this is because his special bottles don't seem to be working as well for him now that he's bigger and he's eating without his NAM mouth plate. We've been trying out some new bottles, and I think we've found a new solution that works for him, but in the meantime, his weight gain has been slower than it was before. The doctor gave us some extra calorie formula to add to his breastmilk for a little while, until he gets back up to speed. I'm hoping that in addition to fattening him up, it also helps him sleep better.

The pediatrician said she sees that a lot of babies after they have surgery with general anesthetic seem to have a mild PTSD type reaction afterwards for a while. Even though they're totally healthy, it just takes them a few weeks to settle down. That certainly jibes with our experience. Just looking at the itemized hospital bill, I can't believe how much stuff went into his little system in the course of 24 hours.

Surgery followup

The roundest head since Charlie Brown

One finger escaped the swaddle when he fell asleep after a busy afternoon with Mom-Mom and Grampy.

We had our surgery followup appointment yesterday at Rush Craniofacial Center. Dr. Polley says everything looks great and is healing just the way it should. He will continue to wear the nasal stents for another month. The 6 weeks following surgery are the most critical time for healing, and we want to maintain the nice symmetry of the nostrils that we got from all that hard work with the NAM.

We are also putting a silicon gel on the scar several times a day to keep it soft, which is why it will always look like he has a runny nose for the next few weeks (although he also drools constantly, so probably his whole face will be kinda wet). Luckily he has developed an enthusiastic love for burp cloths and towels, which he grabs and stuffs in his mouth at every opportunity.

We'll be back for a checkup at the surgeon in 6 weeks. Tomorrow we have Simon's 4 month pediatrician visit, so we'll see just how big he's gotten and get him another fun round of shots.