Saturday, May 30, 2009

Not-so-great news

Yesterday was Emily's evaluation for her cleft palate surgery scheduled in June. She saw the surgeon, the ENT, the audiologist, the speech therapist, a psychologist, and a nurse (I think that was everyone!).

Most things look good. The speech therapist is thrilled with her interest in talking and her willingness to mimic expressions and sounds. She gave us a few ideas of things to work on at home and we're going to get a scrip from her pediatrician to start speech therapy as soon as possible (before the surgery). The psychologist said everything looks good and she doesn't see any reason not to have the surgery (they like kids who have been adopted to be moderately attached and comfortable with their new parents before they do surgery since the kids need so much comforting and are in so much pain afterward). The audiologists said mild to moderate hearing loss, but they didn't feel the test was very accurate. The ENT wants to put tubes in her ears for no good reason except that they put tubes in all of the cleft palate kids (not a reason I'm thrilled with, by the way).

Then there was the surgeon...

When I called and set up Emily's appointment with the cleft palate team, the nurse asked me if her cleft palate was "complete", meaning does it go all the way front to back. My response was no, it is closed in the back. She was a little confused since the palate closes in the womb front to back, so if a child has a cleft lip and palate it will be open completely, front to back. I thought I must have been confused or misunderstood what it would look like to be completely open.

No, I was right. It is closed in the back.

The surgeon believes that someone attempted to repair Emily's palate in the past. Something happened either during or after the surgery that removed the tissue that would have been used for her cleft palate repair. What he believes is most likely is that she developed necrosis of the tissue that had been used to close the palate. The tissue that was forming her new palate died and went away. What this means is that she does not have any tissue left that could be used to form a new palate as in a traditional cleft palate surgery.

Final verdict: At this point, Emily cannot have her palate closed in a traditional surgery. They are hoping to use her scheduled surgery date to put tubes in and take a look at her palate and explore the options. The options basically come down to this:

1) They can take a flap of tissue from the inside of her cheek. The surgeon has not had good luck with this in the past so we aren't very interested in this option. ;)

2) They can form a ceramic retainer that she would wear all of the time that would form a false palate for her. They don't usually give those to children as young as Emily since her mouth is still growing so quickly and it is hard to get the children to keep them in.

3) They can form a new palate using tissue from somewhere else in her body.

4) Our most likely option...They can cut a flap off of the back and center of her tongue. This flap would be sewn into place as her new palate but would remain attached to her tongue for several weeks until new blood vessels grew in the palate area. The flap would then be detached from her tongue and would form her new palate. Our surgeon has normally done this surgery on children much older than Emily (as in 12yo and up), but has recently returned from an international trip where he worked with doctors doing this surgery on children of all ages with very good success.

At this point we won't have any more information for closing Emily's palate until after her surgery at the end of June. We're hopeful that she will be able to have a normal palate some day!


Missy said...

Oh, boy!! That's a stressful decision to make! Having your tongue attached to your palate for weeks sounds miserable, but if they had good success... (Still...!) Shouldn't the surgeon at least LOOK at her palate before making all of these decisions? I mean, all he did was have YOU look at it, right?

Maybe a second opinion??

Anonymous said...

Missy (and all)-

Emily and I spent about 6 hours at the hospital yesterday and were seen by several specialists. We spent about 40 minutes with the plastic surgeon (who was making these comments regarding the surgery options). He took lots of pictures and spent quite a bit of time looking inside her mouth. When they put tubes in her ears, he wants to take a closer look with his team while she is under anesthesia, without doing any surgery, and then discuss further/more options with us. I hope this answers some of your questions.

Mark (Courtney's other half)

jena said...

Ah...what fun... insert sarcasm here....

Sorry things didn't go as expected. I am so glad this doc has recent experience with option 4. We'll be praying for Emily's surgery the end of June. That they will be able to know which is the best option for her.


The Flying Eagle said...

Good thing you had your appt so quick - giving you more time to decide. In case it helps = I was completely amazed at how quickly Garretts mouth healed. It was certianly not fun but much more manageable than I had anticipated. And if he would have had to have the second surgery it would not have been so bad. The palate team is amazing and will definitely help you with your decision. Call me if you want to talk.

adoptedthree said...

Oh my! When they sewed Oksana's tongue to her cheek for the Pharyngeal flap surgery it was just dreadful! I can't imagine doing it for an extended period!

Regarding the ear tubes, Oksana has major sinus infections constantly. She gets lots of ear infections to go with the sinus infections and they all go revolve around still having a small hole in her palate and goo and stuff coming out of the nose. The ear tubes really helped relieve some of the pressure.

The worst part of the surgeries was always the vomiting of lots of blood afterward. We later found out O has a clotting disorder which maybe something you want to ensure she is negative for prior to the surgeries.

Winnie said...


Sorry to hear about all the troubles with the palate correction process, it will all work out in the end I'm sure.

Just wanted to tell you we will soon be neighbors of a sort. We will be moving to the St. Louis area as soon as the house sells. Hubby is already down there working and living with M (Screaming Eagle)so we'll have to get all our Ukies together sometime. Shoot me an e-mail when you get a chance to breathe.
j karnes 2 @ wi.rr dot com

The Flying Eagle said...

Screaming Eagle..... I think she is talking about me! Her husband must be telling her stories of my vocal abilities!!!!

Hey Courtney - thanks so much for the offer of the clothes but we are truly briming at the seams with 4Ts and I can not imagine finding room for anymore. Such blessings have come our way in hand-me-downs.

Aley said she emailed you back about a "go" for Fri nights. I told her to email again and let you know that we are a-ok with her driving there - plus she has her own car now - so it needs to be put to good use!

Forgot to tell you G-man starts therapy with Lynn at Childrens on Tues/Thurs 9-10. When are all of your appts? Any around this time?

Don't forget to holler when the transition slows a bit and you are ready for visitors :-)

Take care girl!

Courtney said...

M- We won't get to see you guys unless our therapy schedule changes (or we add some more!!). We're there on Thursdays at 4 and Fridays at 9 for Dima and we're hoping to work Emily in at one of the same times.