[donnamom]

Can anyone tell me if there are issues with doing cleft lip or palette repair when a child is older instead of an infact?

My research indicates that these are typically repaired when a child is very young. However, with an adopted child, they may be 4-5 and still not have had the palette repair done.

Anyone with any experience here?

[alicia hunter]

A family friend adopted from China a little over a year ago. The little girl was 3 years old and had a cleft pallate. They did surgery shortly after returning to the US. She is doing well. One surgery is all it took for her. She is having speech therapy, but all seems well.

[Dark Fate]

I have seen surgery for this done later in life.
most the outcomes I have seen were very good.

And from my understanding if not repaired it can cause alot of problems later on if untreated.

[prekspedteach]

I am looking at a waiting child who has a grade 3 cleft lip and palette. Cant find anywhere to explain this.....any idea?

[donnamom]

http://www.widesmiles.org/cleftlinks/WS-530.html


Group I - clefts of lip only
Group II - clefts of palate only
Group III - clefts of lip, alveolus and palate
Group IV - clefts of the lip and alveolus
Group V - miscellaneous

Are you looking at China special needs? Thats where I came across the term. This is the most I could find. It doesn't however, tell me how severe cleft is.

[M.Dumas]

Hi, Donnamom.

My stepdad was born cleft palette & lip. He is 48 and never had surgery. He has never had any "real" problems. He can eats & drink everything without problems. He also has no speech problems. Most people don't even know that he is cleft palette. (He has a mustache! lol)
This doen't mean that your child won't have problems.
My neighbours son had to go for surgery at 15 months old. He was having a hard time eating and drinking. He is now 7 years old, and is in speech therapy. He is doing great.
Educate yourself and talk to your family doctor.

~Marcia~

[mom3times]

There's a great web site that give lots of info about clef lip and palate. Its wide smiles. The address is widesmiles.org
I have a friend with two children that were adopted with clef lip and palate. Both had bilateral clefs and both had a couple of surgeries and have needed some speech therapy but all in all they have done great. Both are now teenagers.

[wantababy]

We have had an awesome experience with a little girl that lives in an orphanage in Mexico. She is 4 years old and has a severe bilateral cleft pallate and bilateral cleft lip as well. She had some operations in Mexico (that she almost died from because they did this at a walk in clinic). My father in law brought her here (Florida)in Sept 03 for her first surgery and they almost repaired the entire pallate. She did great. The plastic surgeon who is very experienced with cleft surgeries, has been practicing over 35 years and said hers was the "worst case he's ever seen in his entire career". She was in surgery for over 4 hours. She will undergo multiple surgeries because it was so severe. She is developmentally ahead VERY SMART and personality like you wouldn't believe. She will be coming back the first week of April to have another eval and possibly another surgery at that time. We do mission work at the orphanage and that's how we got involved with her. We are currently in the very early process of international adoption and because of our positive experience with this little ANGEL that stole our hearts, we are willing to accept a cleft lip child.

Hope this helps.

Dana
paper chasing

[oslipitin]

anyone who has concerns regarding special needs should contact someone in the medical profession....or pediatirician....who can give them advice regarding any condition and need be surgeries. Technology is incredible these days...and places like Schriner's Hospital in Phila. Pa...is cost free for those that are truely needy...they have a dedicated staff of nurses/adm/physicians....

I also would like to add: that not everyone can deal with a special needs child.
But if you can....please save them!!! otherwise they'll just become throw-aways ... Too many people are pre-occupied with the idea of a "perfect dog", or "perfect house", "perfect looks", "perfect baby"...remember the story about the Ugly Duckling that turned into a beautiful Swan!!! Now, lets get goin' and help create some miracles!!!!

...it is an HONOR to read and learn from everyone on this site...

Olga

[maggie_va]

I did a lot of research on this when I was considering adopting a child with this need and found out some things that are not mentioned often. Multiple surgeries could be required during a person's lifetime. Orthodontia is usually required at a much younger age and for a longer time. If you don't have dental coverage, the costs can really add up as not all states require this to be covered under medical insurance. Speech therapy is a really possibility and speech problems could persist even with therapy. I joined a mailing list that included parents of children and adults who had a cleft lip/palate. It was very informative.

- maggie

[Bcelli]

To clarify a point about Shriners - they are cost free for anyone - regardless of your financial assets. Their concern is only for the children. All you need is a doctor's referral and a Shriner to sponsor you - in which case my husband (who became a Shriner after seeing what wonderful things they did for our son's hand) will be proud to sponsor anyone who asks. Good luck to all who adopt these beautiful children.

[oslipitin]

....GREAT OF YOU TO OFFER A SPONSORSHIP...SHOULD IT BE NEEDED BY ANYONE.


CLEFT PALATAES (IE) ACCORDING TO SEVERAL PHYSICIANS THAT I SPOKE TO-STATED SUCH SURGERIES WERE EXPENSIVE BECAUSE THEY INVOLVE MULTIPLE SURGERIES AND PLASTIC RECONSTRUCTION...BUT THE RESULTS ARE USUALLY WONDERFUL.

(...and thank you for making a correction regarding my statement
concerning "fees" at SH )

[Houdini]

I have two boys with clefts. My six year old was born with incomplete unilateral cleft lip - no palate involvement. My three year was born with complete unilateral cleft lip and complete cleft palate. My older son had surgery at 3 months to repair his lip and surgery at four years old to widen his nasal passage. He never had to be in speech therapy, although we have been working on him saying "th." My three year had his lip repair at 3 months, ear tubes at six months and palate repair at one year. He had to have T-tubes put in his ears at 2 1/2 years old because the other fell out and he had problems with infections. He is expected to have surgery at seven or eight to do a bone graft from his hip to close his gumline, they will also widen his nasal passage and remove a tooth from his palate at this time. He is in speech once a week for half an hour to work on some bad cleft habits, but is doing great with his normal speech. As far as the orthodontia work, you can check into BCMH (Bureau for Children with Medical Handicaps). They will pay for any medical bills which are left after your insurance pays or will cover some things that your insurance may not. BCMH is housed through the health department where I am. Feel free to send me a personal message if you want to talk outside the forum. Good Luck.

[marybeth]

my husband and i are dearly DTC. Can anyone with actual experience tell me what is considered a "special needs" child? im sure we all have a very diffrent idea of what a "special need" is. According to how much we are each able to handle. Our social worker and we went around a time or two to decide what exactly that means. Does anyone have any actual examples?
We have requested a healthy female 0-12 months or with minor and easily corrected health conditions.
Thanks for the help.

Beth

[kiwi]

There is a whole board for Special Needs & Attachment issues here : http://forums.adoption.com/f221.html

In my personal opinion, a cleft lip should not considered a special needs adoption. (Although there are certainly severly cleft palates that have really high risks.)

My husband has a cleft lip and palate and it has not kept him from anything. He has had several major surgeries (bone grafts, plastic and lots of orthodontics) but Shriners took care of all of the cost. He was 17 at the time of his last surgery and still managed to win the state wrestling meet the following school year.