Thursday, October 17, 2013

Broken Baby

Posted by CheapRunnerMike

***Posted by CheapRunnerMichelle, not Mike.  Sorry for stealing your byline***

"What is a cleft palate?

“Palate” is another name for the roof of your mouth. The palate is both the roof of your mouth and the floor of your nose. The palate has two parts: the front, or hard palate, and the back, or soft palate. The hard palate is made of bone and the soft palate is made of muscle.

A cleft is simply a gap, separation, or hole that results from abnormal fetal development. A cleft palate is a birth defect that results when tissues of the palate fail to fuse during early fetal development. This failure occurs during the 8th and 12th week of gestation. The condition varies from a defect in the muscles of the soft palate to a complete separation of the skin and bone of both the hard and soft palate. It is also possible to have a cleft of the soft palate, without a cleft of the hard palate. But it is not possible to have a cleft of the hard palate without a cleft of the soft palate." (Source - pedsent.com)

When our daughter Kennedy was born...as per usual the pediatrician had taken her right after birth to examine her...about 45min later he came over to speak with Mike and I. At first he asked us if we knew that she was going to be born with a birth defect - our answer of course was no. I had a pretty un-eventful pregnancy, thus only had the one standard ultrasound. He went on to tell us that she had been born with a hole in her soft palate

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Not a pic of K, but this is what her mouth looked like at birth.

It is a lot more common for babies to be born with a cleft lip, than it is the soft palate...so not only was this all new to us...it was also new to many of the nurses that worked with us in the hospital.

So what does all of this mean?!!

After having various specialists come in and visit us over the course of the next few days, we learned that she would only he able to feed through a special nipple attached to a bottle

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This Haberman nipple has a few different parts to it, which actually creates suction within, since Kennedy would not have any suction within her own mouth due to the hole. You'll also note that it is quite a long nipple this is to force the formula down the back of the throat...regardless...we probably had to change her outfits at least 5-6 times a day due to all the formula that would come up and out through her nose all over the place. (I'll spare you an actual visual pic...you're welcome).

This also meant that at about the age of 1 she was going to need to have surgery to repair the hole. The surgery was a success...and to see/speak to Kennedy now, you would never know that there had ever been anything wrong with her.

So why am I telling you all this today?!?

Well over the years Kennedy has had to still go to clinics at the hospital to check her teeth, her hearing, and her speech...well this past summer when I had to take her to see the speech therapist...her "air levels" had doubled since her test the previous year...so now she is having to go for additional testing to see if another corrective surgery is going to be required. Yesterday Mike and I took her for another speech test, this time done with an x-Ray

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xray

Next step is going to be this winter sometime, we are going to need to go back again for them to do the speech test with her, but with a camera inserted up through her nose - hopefully after that appointment we will have a clear course of action laid out before us...until then she's just regular 10 year old girl.

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If you have children - have they ever needed surgery?

Anyone racing this weekend? Tell me about it!

6 comments:

  1. We were getting close to needing to plan some rather unpleasant surgery for my daughter over the summer, but thankfully it was a false alarm.. but we are still on the watch. The next few years are at an elevated risk for some issues for her. No parent wants to think about seeing their child have to suffer.
    Someone cut an onion?
    Kids are so resilient!

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  2. Wow I had no idea. Sounds like you guys are doing everything right and allowing her to be a normal kid. I hope everything works out for her & your fam.

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  3. No kidding! I think surgery when she was young is going to be easier than anything she'll need done now...

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  4. My five year old was born with cleft pallett, this was like reading about her....we have not been to clinic since she turned 4....after reading this I think we need to make an appt, just wish it was not 4 hours away.

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  5. Hunter has had one mouth "surgery" and another minor procedure - I always make Chris take him for that kind of thing - I can't watch him go through it!!

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