Wednesday, September 15, 2010

Moms...

Talk to me, Moms. Any of you have experience with cleft palates? We have an appointment on Monday with an oral surgeon for Zoya, and then in about 6 weeks with a plastic surgeon/ "cleft palate team" whatever that is.

I am sure there are many ways to approach this and I want input if you've been there. I want to ask the right questions.

Here are some of my questions:

-She is very underweight and is a pretty picky eater, although I have seen no rhyme or reason with tastes, texures, etc. Would this have anything to do with her cleft palate? She seems to be able to chew and swallow although it does seem to take a little more effort than the rest of us. Occasionally we see liquids come out her nose but not as often as I would have expected.

-What would be the reasoning behind the orphanage waiting so long to get this repaired? Is there any benefit at all to the child to wait, or is this strictly a financial decision as she had no family to pay for the surgery?

-What are the benefits of having it repaired now as opposed to waiting a few more years?

-Will her speech be more affected the longer we wait? How can we help her in the meantime?

-What is the recovery period like?

-Just how do they fix it anyway?

-Who is the best person to do this job? An ENT? A plastic surgeon? A dental surgeon?

So if any of you moms out there can answer these questions, or if you happen to be a dental surgeon, a plastic surgeon or an ENT (:))......Reassure me please!


24 comments:

Jill said...

I don't know anything about cleft palates, but we had Keith observed to see how he swallows food. Since Keith didn't chew food for a year and a half after we adopted him (I KNOW!), we wondered if there was something wrong there. You might do the same. Is Zoya meeting with a speech therapist? They might direct you where you should go.

Also, I can't remember if I told you this or not, but Iryna couldn't chew difficult foods, like meat at all. In fact, she still can't chew chunks of beef. We have to cut them up into little pieces.

mck said...

She is very underweight and is a pretty picky eater, although I have seen no rhyme or reason with tastes, texures, etc. Would this have anything to do with her cleft palate?

I would definitely have a swallow study done. Reese's aspiration is likely caused by the cleft palate and her Down syndrome facial anatomy, but surgery didn't help her uncoordinated swallow.


-What would be the reasoning behind the orphanage waiting so long to get this repaired? Is there any benefit at all to the child to wait, or is this strictly a financial decision as she had no family to pay for the surgery?

I think it was probably a financial reason. There is not a benefit to wait for a palate or lip repair after a year. We were told they wanted Reese to weigh a certain weight, but I don't necessarily buy it. But, since Zoya is so little, maybe she hadn't hit that magic weight, either??

-What are the benefits of having it repaired now as opposed to waiting a few more years?
Social benefits, MAJOR SPEECH BENEFITS, if she's having feeding/swallowing issues, she needs all the help she can get. And, the surgery really may help your bonding with her and her bonding with you, believe it or not.

-Will her speech be more affected the longer we wait? How can we help her in the meantime?
Yes...especially since she's learning a new language. That palate is probably the second most important thing in her mouth to shaping sounds (the first most important sound shaper is the tongue). I would continue working on imitating bilabial sounds, vowel sounds, and obviously work on receptive language.


-What is the recovery period like?
Reese's lip recovery was much harder than the palate repair, even though that is not typical. The palate repair for her was two nights in the hospital and she was able to drink her bottle again on day two or three, I think....I'd have to look back. The palate repair was not nearly as hard as I prepped myself for, but it was still a major surgery.

-Just how do they fix it anyway?
They cut the tissue on either side and pull it all together, layer by layer. Later on, they'll take bone from the hip or rib and plug up the last bit that they can't close until their jaw is more adult size. Closing that part too soon would not allow it to grow as it should.

-Who is the best person to do this job? An ENT? A plastic surgeon? A dental surgeon?

A plastic surgeon.

How wonderful that Zoya will have a Mommy to comfort her during her surgery recovery!! Like I said earlier, I think the surgeries helped our bonding in so many ways...Reese hurt and Mommy loved her and rocked her and kissed her through it and made sure she had enough pain medication. She learned what it meant to be comforted. Meredith had a similar experience with Emma's surgery, if I'm not mistaking her with someone else?? Let me know if you have any other questions!! I was not nearly as researched for the cleft surgeries as I could have been, but everything really was by the book, straightforward, and is all behind us (except for the final bone graft surgery later one). Oh, and one note about the bone graft...our roommate was a 12 year old girl having that surgery and it was SERIOUSLY NO BIG DEAL!!! She wasn't having ANY PAIN or any issues and went home less than a day after the surgery! I'm not scared of that surgery at all, even though it sounds like a big deal.

Stephanie said...

http://markandcourtney.blogspot.com/ Here's an RR famnily who adopted a little girl with the same issue. I don't know if you know them or not.

Anonymous said...

I echo everything Reece's mom said. (Saved me lots of typing! *LOL*)

The only thing I'd add is concerning speech development. It's even more important for an older orphan, particularly one who's now learning another language.

There is a very finite period for learning language in terms of brain development. (Use it or lose it -- in child development, if you don't use areas of your brain, those neural connections melt away.) There have been many studies conducted; most interesting are cases involving so-called "feral" children and children who were severely neglected. (See the case study of "Genie": http://en.wikipedia.org/wiki/Genie_%28feral_child%29)

In Genie's case and those of many younger children who endured severe neglect, they found that these kids never developed meaningful language skills, despite tremendous interventions. Clearly, an orphanage is a bit better than being locked in the basement for the first several years of life, but not by far. Most orphanages have virtually no opportunity for meaningful conversation with adults (which is how you develop language).

The language issue is compounded by the fact that our understanding/comprehension is largely related to language (i.e. it's virtually impossible to understand certain abstract concepts without very developed language). Hence the dramatic impact on cognition.

Depending upon which school of thought you believe, Zoya may be at the upper end of the spectrum for initial language development, leaving little time to catch up. (And hearing it isn't enough -- you need to actually speak.) In the case of Genie, she never progressed beyond a toddler's language capability and her reasoning never really developed. Genie remains institutionalized to this day (in part, due to political red tape, as she was separated from the one researcher who was so invested in teaching her.)

Chances are, Zoya is already very behind in this area. After researching language development and basic child development, I found the decision was very clear -- I didn't hesitate for a minute.

-Truewell

Csmith said...

My daughter had her palate repaired at 8 months. We had a great craniofacial team that included a plastic surgeon. dentist, nutritionist, speech therapist, geneticist and ENT.
The plastic surgeon does the palate repair. They take a flap of muscle and skin from each side of the cleft and bring it to the center. We had to wait until she reached a certain weight to make anesthesia safer but our surgeon said sooner was certainly better. If the cleft only involves soft tissue you will probably only need one surgery.
Our Maddie had developed an aversion to eating because she was afraid of choking and she hated when food came out of her nose, she often refused to eat for the rest of the day if that happened.
The repair definitely took care of that. Now she loves to eat and she really loves that she can drink from a straw.
Maddie is right on track with speech but without a cleft repair a child can never really say words properly they can't create the pressure needed to force out certain sounds and they will always sound very "nasel".
The surgery itself is short and the recovery time isn't very long. I was surprised at the amount of pain Maddie was in because she had a previous surgery that was more difficult and serious and she breezed right through that so make sure you don't skimp on the pain meds. Once we upped her codiene she was way happier and healed a lot faster. She seemed pain free in about a week and by 2 weeks was eating normally. The surgery and pain meds did cause pretty severe constipation so we really pushed liquids and Miralax. After the repair she really was a different child. Happier, a great eater, babbling up a storm. I recommend finding a children's hospital that has a team that specializes in craniofacial disorders. Many hospitals all over the country have them and it really ensures a continuity of care.

Charissa said...

Thank you all!! I know now I don't want to put it off any longer. Does anyone know what the magical weight is? I'm working hard to get it up but the scale isn't moving very fast. :(

Anonymous said...

http://en.wikipedia.org/wiki/Cleft_lip_and_palate
This article has good information on most of your questions like how it is fixed or its impact of her speech or psychological issues that come with it etc. You can even find more resources through the links at the end of the article.
I hope it helps ...
Zoe (I read your blog almost everyday :) )

Rhonda Sloup said...

My daughter had craniofacial surgery at Children's in OKC and I believe that the plastic surgeon was also part of a cleft palate team. I always like the team approach. Another set of eyes is always good.:)

Anonymous said...

The reason many of the orphanages leave the kids is that there is a minimum weight that the kids need to attain before they are allowed to be operated on. And the kids cannot eat properly so don't gain the weight.

I bought one of the orphanages a harber feeding kit for cleft babies. One of these children died shortly after his transfer to an institution.

The surgery is free in Kyiv but the orphanges need to travel there and have someone stay with the child and pay for their food, accomodation etc(and this is money that is not always available).

We sponsored an older orphan an paid for him to have 3 surgeries re-done when he was a teen (the surgery he got when he was younger was botched).
Life for Vasya had an interesting twist - we found his bio mom when he was 15 and the family took him home. They still write to us. He is now almost 18.
So was a lovely ending to our foray into the world of kids with cleft p.

Cheers
Lynn

mommajeane said...

We have 4 children we adopted with cleft lip/palates. Our son, Luke basically had no palate was the surgeons toughest closure of a palate. I think all the ladies shared great things with you on the above comments..team approach is the best in my opinion because so many other issues are inter related to the cleft issues. Speech is a definite reason to do it sooner than later...we saw an immediate positive difference when Luke's palate was closed. You don't have to postpone here for surgery for the weight issues.. I think that was in Ukraine and the money issues are why they do not repair them there. Recovery for all of our many cleft surgeries was fairly easy...we did have to restrain Luke when he was 3 and 4 from putting his fingers to or in his mouth and he was on a soft diet for awhile but we had no issues and the surgeries were a huge success. We have also done a pharyngeal flap surgery with our older son, Joseph and his cleft. He came home at the age of 15 almost 16... his speech has been helped but he definitely struggles even now with being understood because of waiting so long to do any repairs on his clefts. We are getting ready to do a major jaw surgery on Anna she actually has severe cleft issues according to our team at Hopkins. She is now almost 15 and came home at the age of 7. Our kids with clefts usually have had no eating issues... and they are great eaters and so I can't address that one question. Luke has other issues like heart conditions that would affect his size and stature instead of his cleft issues. I have other children with eating issues who are tiny and struggle with weight gain but they don't have cleft issues.Our Andrew just home from Bulgaria since Christmas eve still gets all of his nourishment from bottles- and he is almost 6 yrs old with lots of delays and neglect. He is also blind which also adds another component because blind kids tend to react to textures even in their mouth. We did do what Jill and mck suggested but he was fine. Also on the cleft teams they have many ot,pt, audiologists, speech and hearing and other professionals who come together and decide the best way to treat your child.. I love the team approach and wish it was like this for some other issues that some of my kids have. It is a long day but worth all the information you get. Hopefully you will find the same at your appointment. If not email me.

mommajeane said...
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mommajeane said...
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mommajeane said...

Sorry my post copied so many times..it was very strange how it took my post. I don't know how to delete or I would the last 2 copies.

breanna from glimpse said...

i've been told the longer one waits the fewer the surgeries... worth checking into. :)

Kelly said...

Charissa,

There is a board on BabyCenter that is all parents of Children with cleft lip\and or palate. There is also a board for food refuser kiddos (like mine but she refuses because of reflux) Anyway I thought they might be able to help you. I directed them to your blog but you can go there too and read TONS of info!
http://community.babycenter.com/groups/a56125/cleft_lipcleft_palate

Anonymous said...

My daughter was born with a cleft of her soft palate, and her surgeon prefers to do the repair between 3 and 6 months. He wanted her to weigh a minimum of 10 pounds. We got it repaired at 3.5 months because she had such a difficult time eating and we wanted to give her the best chance to develop normal speech. Hers seems to have been done on the early side though. From what I have seen, most cleft palates are repaired between 9 and 15 months. I would definitely get it done asap, which is what I am sure your team will advise as well. Good luck to you

Anonymous said...

Charissa,
Check out my sisters blog, www.only1mom.com. My nephew Grifyn just had surgery on his 2 weeks ago. He is doing amazing since the surgery! I am sure Shelley could help you with any if not all of the questions, but she is in Ukraine right now with Connecting the Rainbow. Hope this helps!

~Allison

The Smith Family said...

Hi there! My daughter has a bilateral cleft lip and palate :) I can answer these based on my experience so far :)

-She is very underweight and is a pretty picky eater, al...

Without a palate it is very hard for them to get the food to the back of their mouths. My daughter had a plate put in the top of her mouth before palate surgery and it helped TREMENDOUSLY! Your cleft team will probably weigh the options as to when you see them :)

-What would be the reasoning behind the orphanage waiting so long to get this repaired? Is there any benefit at all to the child to wait, or is this strictly a financial decision as she had no family to pay for the surgery?

The sooner a cleft palate is fixed, the better. It helps with speech and it helps them eat and drink. It also gives them suction.

-What are the benefits of having it repaired now as opposed to waiting a few more years?

Again, her speech is going to be effected the longer you wait. Babies pick up habits as they learn to talk and maneuver food in their mouths... you don't want them to develop habits that will make it harder for her to eat and speak properly.

-Will her speech be more affected the longer we wait? How can we help her in the meantime?

-What is the recovery period like?

Palate surgery is one of the harder surgeries on babies. My daughter just had hers done a few days ago and she has been in pain, but is managing it well. Normally after about three weeks their stitches are dissolved and they can resume a little more normalcy. It really depends on how your child handles pain management. The lip repair was very easy on my daughter, so the palate was not as bad.

-Just how do they fix it anyway?
The palate is brought together and stitched. Our surgeon closed the nostrils (my daughter's were open) then he closed her soft palate, then her hard palate. The hard palate will develop ridges as time goes by. Also it won't be as hard as yours or mine, but it will function just as it needs to.

-Who is the best person to do this job? An ENT? A plastic surgeon? A dental surgeon?
You will go to a plastic surgeon for the palate repair. You will see an ENT in case the child needs tubes (sometimes cleft babies do need tubes to help with fluid build up behind their ear drums -- it makes their hearing much clearer... a hearing test will determine if they are having hearing problems). You will see an oral surgeon if the child has to have a bone graft... which is usually the case if they have a cleft in their gum, but varies.

Cleft surgeries are hard - as are any other surgery your child has to go through. But the benefits are wonderful! And once they are done, the child will almost instantly have improvement in one area or another.

The Smith Family said...
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The Smith Family said...
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Stephanie J. said...

I am from the cleft palate message board on BBC and someone posted a link to your questions! My daughter was born with a cleft palate so hopefully I can answer a few things.

-She is very underweight and is a pretty picky eater, although I have seen no rhyme or reason with tastes, textures, etc. Would this have anything to do with her cleft palate?
Yes - our palate helps us move food into our throat from our mouth, and with a gap there, it is more difficult to swallow. Drinking from a straw can also be impossible.

-What would be the reasoning behind the orphanage waiting so long to get this repaired?
Probably it was a financial reason. Most US surgeons do a palate repair between 6-12 months. This is done to help feeding issues and to prevent speech issues before they really start talking.

-What are the benefits of having it repaired now as opposed to waiting a few more years?
Your team will do the best job answering this one since she's so much older than our kids were.

-Will her speech be more affected the longer we wait? How can we help her in the meantime?
Yes - when you meet with your team, it usually includes a speech therapist/pathologist who will evaluate your daughter to see if she is able to make the sounds appropriate to her age, and what therapy if necessary they can do after her palate is repaired.

The other speech issue is that children with cleft palates typically need ear tubes before their first birthday. Their eustacean tubes do not open up as easily as other childrens, to let air into the ear canal and drain fluid out. This can lead to build up of fluid in the ears, and if untreated, hearing loss. So your team will check her hearing as well.

-What is the recovery period like?
For an infant it is about 2 weeks. For an older child I am not sure.

-Just how do they fix it anyway?
For ours, they did a layered approach. They cut back the tissue around her palate, then reattach it in 3 layers of muscle and overlying tissue. For my daughter they were able to stretch the existing tissue, rather than graft in tissue.

-Who is the best person to do this job? An ENT? A plastic surgeon? A dental surgeon?
A plastic surgeon with a lot of cleft repair experience is your best bet.

The team approach is really nice. It's one gigantic appointment with maybe 6-8 specialists, but is worthwhile. In our case, we met with a genetic counselor, plastic surgeon, nutritionist, speech pathologist, audiologist, and an occupational therapist. It was very interesting but took several hours! Good luck to you and your new little angel.

Monica said...

Hi!

If you join the yahoogroup adoptcleft and present your questions there, I bet you will have lots of answers from people who have been there done that.

Sheryl said...

Wish I would have seen this post earlier.My daughter was born with pierre roban syndrome. Her lip and gum were not affected. She had a hole in the top or her mouth. It was repaired at 14 months old. I really don't think there is any advantage to waiting for the surgery. She needed speech therapy which was provided when she went to kindergarten. We thought her speech issues would clear over time, but in fact did need the speech therapy. She spit up a lot when she was on formula. We had to hold her on her side while feeding when she was really little. She was in the hospital for three weeks because she was not gaining weight. She's 17 now and no one can tell she ever had a cleft. sHe does have some trouble with TMJ.

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