Cleft Lip and Cleft Palate

A few years ago a friend of mine had a beautiful little girl who was born the same way. They had no clue until she was born, imagine the shock they went through. I'm happy to inform you that after a couple of surgeries she's just fine. You can hardly see any scars. She has however had to go through speach therapy and when she was really small, even learned some sign language so she was able to communicate with her parents. Her speech gets better as time goes by, so keep faith and remember, it's a miracle what doctors can do now as compared to years ago. At least your friend knows in advance what they're going to go through, and with faith and good medical care, their baby should be just fine.

good luck, and my prayers are with them.

dynaohana

Hi L. I have no experience with this I just wanted to say Look at Joaquin Pheonix the famous actor he had one. They do surgery and fix it up and look where you can be a handsome man in the movies and very sucessful. They will be fine. Take care A. p.S. Just a silly thought but a positive way to look at it and of course a blessing on the way

A couple of years ago, I read an article about a Chicago area pediatric surgeon who repairs cleft lip/palate differently -- somehow he manages to hide the scar inside a nostril so that it is completely invisible from the outside. I don't remember his name, but I'm sure a few minutes with google would turn it up. I would suggest telling your friend that their might be several different options for closure of the cleft and to do some research, because my (limited) understanding of cleft issues is that they are almost completely fixable with surgery, and that the scar that remains is the big deal. Good luck!

I did a fundraiser for cleftAdvocate at my business. I keep a charity page with groups that we have supported in the past. The link is below. There is a link and description of what the group does. I attended an event for them in Chicago and they are a great group. All of their members have children or have themselves a cleft pallet. After the help they recieved from the shriner's hospital in chicago, you really can not even tell. The founder is a wonderfull lady. Her name is Debbie Oliver. If you can get a hold of the Lake County News-Sun Weekend edition August 11-12 2007, Natalie, now 12 talks about her life after being born with a cleft. She is an inspiration to all. God bless!

http://www.easygourmetmeals.com/charities.html

L.,
Having a child with Down syndrome I learned right away that people do not know what to say or do. I found the most comfort when friends and family or anyone simply said" I do not know what you are going through but anything you need just let me know & I will do whatever I can to help you." That helped me the most.

Kids with cleft lips & palates do great. With the surgies & speech therapy today, it is almost unnoticiable .

Just be a good, supporting friend like you are doing!

I would point out that those are easily fixed conditions these days and will in no way deter their child from being a success in life.

Just watch the Johnny Cash movie or Gladiator....the actor in that one had a cleft pallet.

It is painful to think your little one will have to endure surgeries to correct it, but in the long run..their baby will be fine.

My sister was born with cleft palate and back in the 70s, the doctors didn't know what they know now. Hopefully it's not too bad. My sister wasn't able to drink from a bottle too well because they can't suck anything. My parents had to use like a turkey baster to shoot milk in the back of her mouth. My sister is fine now and beautiful -- she had several surgeries to correct her palatte.
My advice is to research things for the baby and what he/she will need to be able to eat. Maybe, if you can spend the money, make a cute gift basket with items she'll need (ask the doctor or online). Also reassure your friend that a lot of people have this and to make sure to treat their baby no different than anyone else.

L., you are a good friend.

There are a wide variety of degrees of cleft lips and palates. Like many have posted already, surgeries have come so far. It won't be long before their baby is up to speed.

Encourage them to treat their infant like any other baby... have portraits taken, send out birth announcements, anything that any other parents would do to celebrate their miracle baby. They have finally been blessed with their baby. They want their son to know they welcomed his arrival, and weren't uncomfortable with him when he arrived.

They could check around to see if their are any programs within their school district that would help support a family of an infant with special needs. I'm not implying that the baby will be intellectually involved. I am saying that if the parents can find a network of other parents who are going through something similar, they might find an additional level of support.

You might see if you can locate an instructor for "Baby Sign." I taught my husband and my infant son sign language. A baby's intellectual abilities can handle communication. The muscles of speech just aren't able to until they are older. The hands of a baby; however, CAN handle simple signs! It helped immensely with lessening my son's frustrations. We taught him eat, drink, milk, please, thank you, more, play, sleep and others (his colors as he got older),etc. If both parents know it, and they use the signs whenever they verbalize it, and while going through the activity (sign milk when giving the baby their bottle), the baby will pick it up, and usually fairly quickly. This might be very helpful for them and will certainly help their baby lessen his frustration when he's hungry, tired or thirsty. My son started responding and initiating signs when he was less than six months old.

Someone suggested gathering things a baby with a cleft lip and palate would need that might be different from what other babies need, and I think that is brilliant!

You are a good friend. Continue to be there for them.

It took 14 years for us to get pregnant with our son. I know how eagerly they have been waiting his arrival. I don't know what they are going through, but I do know they are lucky to have you!

L.:

you are doing it.. be there/ be supportive/ talk to her about where she could use assistance... locating facilities for the surgery... offer to go with to interview md's.. there is a fabulous facility in va where the surgery is done in the first month of life..arrange for a hospital grade pump rental so she can giver her milk to the baby if he has trouble suckling... which he may...

P., RLC, IBCLC
Breastfeeding and Parenting Solutions

I was born with a cleft palate (not lip) and I turned out mostly normal:) As far as long term affects, of course a baby will have a scar from the lip repair, but they do wonderful things with surgeries now and I'm sure it will be minimal. I was more predisposed to ear infections as a child due to eustachian tube issues that apparently relate to the cleft palate.

Help your friend look on the bright side: this is a birth defect, but non life-threatening. It has a finite end: when the surgery is complete, not like dealing with a long illness with an uncertain end. The baby's intelligence and mental abilities will not be affected. She/he will be able to run and play with no limitations. Really just help her to see past the shock and to the bright side of what the baby will have.

When you see the baby after birth, find something about the baby to focus on, pretty eyes or lots of hair, something that you can discuss that help mom and dad focus on what is beautiful about their baby.

Obviously I didn't have to deal with this personally since I was just a baby, but they are lucky to have a friend like you who wants to be there for them.

my cousin has a daughter that has went through multiple surgeries. they live in san diego. e-mail me your address & i will forward it to her. she has TONS of info - there is a specific websight that she refers to all the time. she had seen several specialists in their area & is always happy to share info.

____@____.com

L.,
My grandson is 7. he was born with a cleft lip and palate. I can tell you what we went thru. When he was born he weight in at 8lb 2 oz. within a week he had lost more than a pound due to not being able to suction on a bottle. The nurses / doctors didn't tell us there was a special type of bottle which babies with cleft lip / palet can drink out of. It is called a medela / haberman feeder. They are expensive. i think we paid about $10-$15 each for them. But it was the only way he could eat. I have a link for an ebay auction that you can look at if you want. We ordered them straight from the company but I don't have the info anymore as he is almost 8. My point with all of that was that you might want to buy her some of these for a shower gift. also. My grandson went to shriners hospital for his surgery. He had the first one at about 2 months. to close the lip. the next one when he was 1 year old to do the first of several surgeries to fix the palat. that will not be finished till he is about 20. But the doctors at shriners are wonderful. You can't even tell he had a surgery done. they do so much withplastic surgery now. and they used on him a surgical glue (sort of like superglue) so no stiches scar. Feeding of regular food can be dicey. sometimes it comes right back out the nose when your feeding them lol. you just wipe them off and start over. by the time he was 2 he could eat anything bottom line they are just like any other baby. they need to be loved and cuddled and fed etc. just have to get the feeding part down quick. hope this helps. if you have any questions we could answer feel free to email me.
S.

My cousin had a little girl with a cleft palate. They didn't have money for the surgery but the Shriners hospital in Chicago did it for free. If your friend can't afford it they can talk to the Shriners. My cousin's little girl is grown now and married with 2 kids of her own and she is completely normal. It will be a difficult start for her child but most likely the baby will be completely normal except needing surgery for the cleft lip and palate. You are a great friend for her to lean on through all of this. I'm sure she is glad to have you.

Dear L.,

Please let your friend know that this is one of the most fixable things there is! My father-in-law was born with a cleft lip and palate and had it sergically corrected when he was a baby. When I first met him I honestly could harldy tell anything was different, and he is 70 years old now. I know they have come a long way in refining the technique. A great plastic surgeon can really do wonders, and insurance will pay for the proceedure. I wish your friend the very best!

J.

My husband was born with a cleft lip and palate. He's had many surgeries to correct it, but today they have come so far that it's amazing what they can do. I know it's scary to have a baby with that, but they usually are fine.

I'm sorry to hear about your friend and her baby. In addition to being there for her, you could also make and freeze dinners, hire a cleaning service/go over and help clean her house and other things that would help any new mom - and especially one who has a baby with special needs. You're a good friend!

My son and I were just watching the show Medical Incredible the other day and had a baby boy who had both - and his doctor, who also had both, did surgery on him to restructure and to adjust for when his jaw and teeth grow. I don't remember the doctor's name but the show is on Discovery Health (a very cool show by the way) and the website is health.discovery.com/convergence/medicalincredible. Good luck to her and you!

If you would like to I could send you an application to Shriner Children's Hospital in Chicago. They do the best work and it is at no cost to the family. They will also provide transportation to the hospital so the family doesn't even have to pay the gas. I would call right after the child is born and make an app. because they can help with the feeding issues and talk about surgery. They also do dental work and speech therapy when they get older. My nephew has clef lip and palate and they where wonderful to him. They have the best team of doctors and spend all day with the child making sure that they get the best care and that you know what to do when you get the child home. If they would like more information let me know because my dad is also a shriner and he can be a sponser on the application. Message me if they would like to talk or if they would like more info.

L.

Such a wounderful friend to do research and be supportive of a birth defect.

I watched a special years ago on cleft lip and palate. I do not remember who made it. It was a medical documentary. I do know that the state of Michigan has well trained doctors on the subject.

My co-worker and her sister both had problems. She had cleft lip and her sister cleft palate. They were put in the research of a different team. There is a corlation between Swedish desent and the condition. I know with cleft palate the worst part is the child has trouble eating. They have nothing to push thier tongue against to push the food down their throat. I would look at organizations on the subject that support individuals and families. Look at genetic counseling sites and special medical sites. I do not know if Mayos has anything.

The most important thing is to be a friend. I do not think that your girl friend would have been given such a challenge if she were no up to it. Life is going for one problem to another with the most smooth grace that you can.

Good luck. Kiss the baby for me and tell he is beautiful when he arrives!