Cleft Lip-When to operate?

[Torri]

On March 5, our son was born with a cleft lip. We were extremely scared. Nobody on either sides of the family has ever had a cleft. It has been almost 3 weeks now. After reading some of the stories, it seems our son should be having his surgery now. We don't know what to do. Two surgeons in our area, New Jersey, say to wait 3 months. We don't know how to go about finding the best, most successful surgeon. We are so nervous of making a bad choice. Please if you can help, we would appreciate it. Thanks.

[Jenny - Mother of Ryan]

Torri,


My son was born on Feb 9th with a unilateral cleft lip and palate and he has not had his first operation yet. He was scheduled to go at five weeks old, but it was canceled because he got sick. They now realize he also needs ear tubes, and want to do the operations toegether. I don't know if there really is a perfect time. When he was first born I was so anxious to get it over with and wanted to have the operation right away. Then I started to read about it and realized they often want these babies to be 10 weeks old and at least 10 lbs before ever considering operations. Remember, there are many risks with any surgery and especially on young babies - so you need to do what is best for your baby. I remember feeling like I could handle the situation better, the stares, the questions, if he had his surgery right away, but now after learning more about everything I can be patient and wait for the best time for my baby. You have to trust your doctors, they have been doing this for a long time, and trust that you know what is best for your child. I love to hear about early success stories, espeically when it is beneficial for the baby - such as helping with feeding, etc. but sooner isn't always better for every baby.


Sorry so long...feel free to e-mail me and we can talk further (mikegago@etv.net)


Jenny - Mother of Ryan

[Lucas' mama (jewelg1@vist]

Hi! I have a son who is going to be two in April...and he is a real beauty. Email me privately if you would like to see pics of him on our home page. He has his lip repair done at three months...and many of the other moms I know with cleft affected children also have surgery at three months. Early surgery is a new thing, and I DO know one baby who had lip repair at five days old. But, it is alos VERY common to wait for the baby to be bigger and stronger, and for maybe a bit more lip tissue to work with? I know how you feel...you just want it over with...but waiting really is better sometimes. I agree with the previous post...you need to trust your doctors...they have been doing this a long time. I also know what it is like to be scared. I am here to tell you that there IS light at the end of the tunnel. I am MORE than happy to correspond with you as you go through this...email me and I can 'hold' your hand. I can also hook you up with other support systems, if you like.
with love
Jewel

[stephanie]

torri-my son had his lip repair at three month's, his bone graft at 8 month's, and is scheduled for his palet repair in july. he then will be 16 month's. no matter what age, it's so hard to put your child through it. but i'm like you-neither side of my family had one and some never even saw one. he also has ear tubes-those are nice if your child has a cleft palate. they did that at his first surgery. good luck to you and stay strong...if you need anything just holler.

[Chrissy- mother of Alix]

I am a mother of a 5 year old little girl. She had her lip repair at 3 months old and her palate repair at 11 months old. Her surgeons do not want to do anything else until she is about 9 or 10 years old. That is when they will do her bone graph and maybe a lip revision also a "nose job" (touch up her nose a bit) I have heard from many surgeons and cleft panel teams that the longer you can wait to have anything done the better it is for the scaring and results of the surgery. However, it is necessary to get the lip and the palate repaired within the first year so that feeding and speech will not be interupted. Just a little advice that I have learned. Hope it helped.

[Mgish@webtv.net]

our son was born with a wide cleft and palate.he had his lip repaired at ten weeks.we found a pediatric surgeon who was two hours away from us in Louisville,Ky.we could have had his lip repaired at home by a plastic surgeon ,but he did not specialize in pediatrics.my advice to you is to look for a doctor who does the type of operations all the time.and i know you may be wanting to get it done as soon as possible,but i believe our doctor knew when the best time was even though the waiting was hard.by the way,you will be amazed when your baby has his lip done.best of luck!!!!

[Torri]

Stephanie,


Thanks for the encouragement. Our son's surgery is in June. We were disappointed to hear he will have to have a bone graph at age 6. How do you explain it to a 6 year old. Anyway, one step at a time right? This whole thing, plus living with a new baby who doesn't sleep at night, is getting to me a bit. I feel a little lost in life right now. Thanks for listening.

[Torri]

Jewel,


Thank-you.

[Valerie]

My daughter was born April 18, 1999 with a cleft lip.
Fortunatly, the palate was not involved, but that didn't
make the idea of surgery any easier. She ad her surgery
done when she was six months old. She is a beautiful baby.
My advise would be to find the best doctor for your child
and not to rush the surgery. I've read that the more
that the child weighs can help the surgery and recovery
go alot smoother. Be patient, your child will be even more perfect.

[Wendy]

Hi Stephanie
I read you details on you little boy and was interest to heat that he had a bone graft done so early. My little girl will be 3 in July and she has not yet had the bone graft done. At 5 months she had the lip and Hard pallet repaired, and at 9 months, she had the soft pallet repaired. She is about to undergo another operation to extend her soft pallet as her speech is being affected.


I would love to hear more on your little one and they way things are done were you are. By they way, where in the world are you. I am in Australia.


Looking forward to your response.


Wendy

[Vicki]

My baby with a cleft lip (and probably palate) is due any day now. I am trying to decide if I should use the surgeons where I live who wait 10 wks to repair the lip or have the surgery done in Norfolk (4 hrs away) where they operate right away. I just don't know the benefits or disadvantages to doing one over the other? Do you?