Cleft Lip and Palete

If you call Parents Helping Parents in San Jose, they can connect you with another mom who has been through the process. the number is ###-###-####.

A.,

Congratulations on your pregnancy. I have 3 children (expecting 4th in August) and both my 1st (almost 10 years old) and 3rd son (almost 3) have bi lateral cleft lip and palate. Yes for the most part it is cosmetic and with a few surgeries can easily be repaired. Where do you live? What type of insurance do you have? Maybe I can help you locate a good cleft team.

My oldest son was in the hospital for just a few days after birth and that was mainly until he got the hang of eatting. There are a few different bottles that you can use to feed a baby with a cleft - The Haberman is what we used with my oldest but there is also the Pigeon (I used with my youngest) and the Mead Johnson, we didn't have any luck with this one. My youngest was in the hospital for a month but he was also born 6 weeks premature.

The surgeries requiered are really going to be determined by how severe the cleft is and if it is just one side or both sides of the palate and lip. My oldest had his lip repaired at 3 months, and had his palate repaired at 15 months. Then last year he had the rest of his palate and gum line repaired. His biggest issue is Speech, but he goes to speech therapy and has greatly improved. The youngest because of his premature birth didn't have his lip repaired until he was 11 months and his palate at 15 months. He will still need another surgery down the line to fix his lip, and to have his palate and gum line finished.

If you want to send me a private message with your email I could send you some pictures of the boys. If you live close enough maybe we could meet up somewhere.

Also, I want to put you in contact with an online support group where you can get every question imaginable answered along with great support- Cleft Advocate at http://www.cleftadvocate.org/ then click on Family to Family connection on the upper right hand corner. The other one is Wide Smiles ( a local one based out of Stockton, CA- but there are women from all over on here) http://www.widesmiles2.org/sitemap.html
D.

A., My grandson was born with a cleft lip and palate. It was pretty scary at the time. However I can tell you he is now 9 and to look at him except for the very fine scar line that goes down from his nose to his lip you can't tell it was there. He has had 2 surgeries. And will undergo more to fix the palate as he grows. they are expecting 2 or maybe 3 more as they have to keep fixing the palate as his head grows larger into young adult and then adulthood. There is something that the hospital didn't do for my daughter at birth though that I will tell you now to invest in and have it ready when your baby is born. There is a bottle system caller a haberman feeding bottle. We had to have this as my grandson couldn't eat out of a regular bottle. they can't suck because the palate is open. The nurses at the hospital started him out with a regular bottle with a really soft nipple but if they can't suck it won't work. So talk to your pediatrician or someone at the hospital about this and get them ahead of time. you can put the breast milk or formula in them. they are expensive I think we spent $50 on 3 bottles. But they were they only way he was able to eat.

another thing also. My daughter was able to get all his surgery done at Shriners hospital in Chicago. and doctors from the crainial facial institute did all his surgeries.
good luck and you can message me off the list if you need to ____@____.com

A dear friend of mine also had a son with a cleft lip, otherwise completely healthy. He also went through an operation, and like the other readers have responded, you can barely notice the scar. He's an absolutely beautiful boy, as I'm sure your son will be also. I hope upon reading all the responses, you'll be more rest assured. I understand completely how worrisome this could make you, as a pregnant mama. Afterwards, I'm sure you'll appreciate that this is just a cosmetic issue, and not something more threatening. I wish you the best!!!! Congrats again on #2!

My daughter did not have cleft palate, however, she had a very large hemanginoma with protruded from her forehead. We were not able to find a surgeon until she was 19 mothes old to remove it. Most people will tell you how beautiful your baby is, if they make a comment--but some may ask what is wrong. Just be prepared for that. Sounds like you will be able get some help shortly after he/she is born. So, you baby will not have any lasting effects of being asked about it. That is great.

My co-worker has been through this. I didn't even know her son was born with a cleft. So, that should make you feel better. She mentioned it when she was pregnant with her second. Then, I thought, oh yeah, I sort of remember he has a scar on his lip, but it not a big deal at all - hardly noticible. I know it took several sugeries but it's amazing what they can do.
Try not to stress yourself out. I'm sure your boy will bring you tons of joy and you'll find your strength to make it through this.

I see no one has answered.
I have a friend whose little boy had cleft lip and palette. He was the most darling young man.
The surgeries were many. They started when he was a baby. He had one every two years or so to help him repair his palette, they pretty much did a good job on his lip. Kids could tell though and even kindergartners and first graders were pretty cruel. In 2nd grade he had another surgery and he has really healed up quite nicely.
This young man was one of my daughter's best friends. We have since moved but his mom says things are going much better for him lately. He is in 6th grade.
I can't tell you anything about the whens, hows, and whys of the surgeries, but the plastic surgeons are doing a very good job at correcting it.
He will be OK. He is special, and God only gives us what we can handle.

Hi A.,

Check out :

Center for Craniofacial Anomalies
513 Parnassus Avenue, S-747
San Francisco, CA 94143-0570
Phone: ###-###-####

This is part of UCSF Medical Center.
Good Luck.

A.

Hi A., How exciting you are havng a 2nd baby! I just wanted to share something with you. A couple years ago I was looking at a local hospital website for the babies born that month and clicked on a very unusual name to see. I felt somewhat sad to see this sweet little girl with a cleft lip. Such pretty eyes, gorgeous hair, and a dimple in one cheek...but.. a cleft lip. A few months later happend to be at a drs office and in the waiting room was a young M. and an adorable little girl just barley standing on her own, and giggling,,soooo cute. And then the M. called her by name,, that same very unusual name Id seen on the website! I had to ask.. and sure enough, this was that same little baby with the cleft lip after 2 surgeries and you couldnt see more than what looked like a slight scratch on her lip. M. said she had 1 more surgery to go and the scar was fading nicely. I was so touched by how well she looked, how happy she was, and how the M. said it had scared her at first but now she barely thinks about it. I just marvel at what science can do now and wanted you to know there are great things to look forward to with your new son. Best of everything for you and your growing family!

You've gotten many responses and a ton of wonderful advice. So I just wanted to make sure you knew you were not alone.
My son was born with a cleft lip and we did not know about it till the day he was born, quite a shocker after an emergency c-section. Be happy you know before but don't stress too much cause there is nothing you can do and nothing you did caused it.
Be prepared for some surgeries and lots of teeth problems. My son did not have a cleft palate instead he had excess teeth parts in the roof of his mouth that we had removed this past fall.
You can look at my page, there are pictures of my beautiful boy and you'd never guess he was born with a cleft.
I think clefts just make them extra special :)

Hi A.,

My son is 1 and was born with a unilateral cleft lip and an aveloar cleft (a split on the front gum - not quite a cleft palate). My husband and I found out on our 20 week ultrasound. We were so shocked considering this is not a family trait!

It's really strange to think about my feelings from back then because everything turned out so different from my initial worries. I know it sounds terrible but I felt that my baby boy wouldn't be "beautiful". Well long story short, he has had his 3 month operation, the scar wasn't healing as it should but instead of performing another surgery, they decided to leave the scar to see if it would smooth out (it had become very bumpy) anyway, scar has smoothed up now.

It was very hard during my pregnancy to ever imagine a time where I would be "over" the cleft lip ordeal, but when I look at him, I don't even think about it any more. We have not let it define who he is. I promise, it will all be OK. It might seem scary but once you see the face of your little baby, those fears subside a little. If you have any other questions please let me know!

All the best,

L.

A., Congratulations on your pregnancy. D.G listed some great resources that I also would really recommend. You are not alone. Cleft lip is a really common. If you have not been referred by your doctor. A Genetic Counselor may be helpful to give you information about cleft lip and help you get connected to the resources including doctors. Many times you can meet with medical specialists and other families during the pregnancy to help make things less scary once your son gets here. I am not sure about your health coverage. But UCSF, Children's Hospital Oakland and Kaiser Oakland all have craniofacial clinics that work with kids with cleft lip. All the best to you, N.