Cleft Clinic Appointment

Well, the appointment was fabulous. I cannot say enough good things about everyone we saw. We saw Dr. Grant (the plastic surgeon), an audiologist, speech pathologist and a geneticist. The reason for the genetic consult was to rule out that her cleft was a part of any "larger" syndrome that would affect other areas like learning development, kidneys, heart, etc. Here's the scoop on what we found out.

First, Dr. Grant said he will NOT have to repair her cleft at this time because her palate is essentially closed. The hole she has is due to the cleft of her gum so language development shouldn't be an issue and she is eating fine. He said that as she grows older, she will learn to control the liquids coming out of her nose when she eats because it will start to bother her. Her first surgery will be around 4 years of age. At that time he will do some work on her nose to put some length between the nose and the lip, and he will revise her scar since her lip will have grown. He called it "fixing her up for school."

Then, her gum cleft will be repaired at around 2nd grade (that's average age; it can be done as early as 6 years old but it depends on her teeth, I think). An oral surgeon will do this surgery and it will actually be a bone graft from bone in her hip to build in the cleft. They said the cleft part is not bad but the bone graft is pretty painful. Dr. Grant said she looks great and everything is "normal" for a cleft.

Then, we saw the audiologist who tested Eden's hearing. They can't test each ear at this young of an age but said she is hearing normally with both ears. Her eardrum is not moving as much as they would like (probably due to the fluid) so they referred us to an ENT to see about putting tubes in.

Next, the speech pathologist listened to Eden a little bit and said she is making all of the sounds she should be able to at this age. She said they don't even evaluate internationally adopted children until they've been home for 6 months but everything sounds great. She gave us some handouts to help us know what sounds/words she should master over the next year.

Lastly, we saw a genetics doctor. This is where things got interesting. You may have noticed in Eden's photos that she has 2 indentations on her bottom lip. It almost looks like she's bitten her lip. Well, this is actually salivary glands that are "in-grown," so to speak, and it is an indicator of a genetic syndrome that I can't remember the name of. This syndrome only causes clefts, and if Eden has it there is a 50% chance that her children would have cleft. Dr. Grant said when he revises her scar he can actually drain those and her bottom lip will smooth out. They drew blood to check for a certain chromosome that will tell us if she does have this syndrome. We hope that the test is positive because if it is, the doctors will know that her cleft is NOT part of any larger genetic issues. And, Eden will know that her own children have a high chance of having a cleft as well. This is priceless information for a child abandoned with no family history. I'm not sure what the next step will be if the test is negative. The geneticist said they start with tests that they think will be positive and work from there.

So, we had to make another trip to the lab for yet another "ouchie." They drew blood from the vein in her arm but we didn't have to hold her down this time because it was only 1 vial. She did great. She screamed but as soon as I told her it was over she did the sign for "all done." Then, mommy whipped out the secret stash of teddy grahams I had been saving. That did the trick.

We will go back every 6 months for follow up until her surgeries are all done. Dr. Grant said to go ahead and take her to the dentist because cleft kids have a higher risk for tooth decay so they will want to start seeing her around 2 years of age. And, he said start saving for orthodontics. They will refer us to an orthodontist that specializes in clefts when the time comes for that. What a resource this cleft clinic is!

Overall, it was a great visit and we walked away humbled that God has surrounded us with the resources to meet every one of Eden's needs. Every doctor that saw her just raved at how well she is doing, saying "We see a lot of adopted kids and she is doing SO WELL." This gave me a chance to brag on her foster mother in China and again acknowledge the incredible gift that she gave my precious daughter.

As we left Eden waved, said "thank you," and blew kisses. As the nurses teared up at how sweet she is, I was reminded again of what blessings these children are, and that Gene and I have been part of an incredible miracle of God giving an orphan a family. "Lord, please don't ever let me grow numb to what You have done. May Eden be a daily reminder of Your goodness, grace and faithfulness." Amen