Surgery Early vs. Later

[zaks_dad@hotmail.com]

Hi all.


My name is Louis. My son Joshua was born on memorial day of this year with a bilateral cleft lip and pallette. Otherwise, he was healthy 7 lbs 3oz, delivered right before 36 weeks.


Suprisingly, he eats about 2oz of breastmilk from a haberman bottle every 2 hours. they even let him go home from the hospital after 3 days.


We ran the gammut of emotions you all describe. Shock, pain, guilt, blame, sorrow, but we were elated that there was nothing worse. and reached down and found the strength to learn and conquer.


I am trying my best to get all the options possible before deciding on a team of specialists, and which type of surgery.


On the one hand, there's the regular approach. thats the one that everyone seems to be saying. lip in 3 mo., pallette in 1 year or 16 months.


Then theres Dr Magee's approach. This is the dr. from Va. that operates on the lip in 3 days and the pallete at a month. sometimes he does both at once.


Has anyone had this done? I assume getting it done earlier allows the child to develop speech at a much younger age, therefore eliminating much of the speech difficulty encountered by a child having the procedure done at a later age.


The longer theory is that the skull needs to develop more before surgery is performed.


Does the child that has the surgery done early have to undergo more procedures later on because of bone development but have the benefit of having his pallette for speech earlier?


Does the shorter approach have any more dangers than the longer approach? Which one has better physical results?


This fourum has both enlightened me, given me hope, yet also frightened me beyond words. The people with the horror stories about growing up with this condition make me feel like I have inadvertantly condemned my poor child to a life of ridicule, shame and hopelessness. They are only overshadowed by those who chose to have hope, and a positive attitude toward the rehabilitation of themselves or their children.
peace to you all.


Louis
zaks_dad@hotmail.com

[JT]

I feel the same range of emotions as you.
My child was born with cleft lip and is scheduled for surgery when she is 3 months. The advice in Asia here is also the same 3 months - for repair of lips etc.
I think it is a well-tested schedule & the current practice in some parts of the world for real fast surgery ie 3 days for lip repair is something that's still rather new.
Most of all, uyou should feel comfortable with your doctor and have confidence in him / her.
I went through the stages of wanting to find who is the best doctor but ultimately, it'll be your child's healing process and not so much of the doctor's skills.

[Trisha]

Hi Louis,
Congratulations on the birth of your son, and for really looking into the best treatment. Good luck to you and your family.


I am a 34 year old female who was born with a bilateral cleft lip and palate also. Way back when my treatment started, each surgery was done as a separate step. For example, closing one side of my lip was one operation, closing the other side another operation, and the palate was yet another surgery. It was probably agony for my parents and family, and I was in the hospital for several days each time. I only had the "heavy" bone graft operation as an adult, age 28, when I decided for myself to have it done. When it was recommended to my parents when I was a child, they thought it was too risky a procedure, and I just had braces for the longest time, and no other treatment for the mouth.


Though my treatment was 'conservative', and dragged out for too many procedures (I wisened up as an adult, found a great surgeon who fixes up several areas at a time), I had no problems with features that grew distorted, and there is no problem with my speech at all. (I strongly recommend you take your little one to a speech therapist who works with cleft kids, as soon as he starts to say "mamma and dadda". It made the **biggest** difference for me. I started before I was 2 and my speech does not indicate at all that I had a cleft)


I can't recommend delaying or speeding up the surgeries, or a particular treatment plan. But know that if some things are delayed, it's not the biggest deal. (I'm proof of that, still in a retainer! If you are not bothered by the ignorance of some people, and some staring, then you should just continue to do what's best for your child on a physical level. I disagree with the notion that a child should prematurely be operated on, for example, having rhinoplasty at age 8, just so that he is not teased in school. Such a big operation can cause problems later on that would be hard to fix.


I know you'll do the best thing for your son, and I don't have to tell you, extra hugs and kisses make a nice, big difference. Take care.

[jgorman@hotmail.com]

All I can say is if you can get in with Magee do it!!!! We had a son born 9 months ago with a severe bilateral cleft lip and palate. We found out 3 weeks before he was born that he was going to have this defect and we started the process of what to do and when. We interviewed several surgeons and visited their clinics. The long and the short of it was that Dr Magee has done over 4000 lip and or palate repairs. He has seen just about everything that can happen and feels that the advances in anesthetics and pediatrics make the wait unnecessary now. Talk to him and ask the reasons why - I am not a doctor and do not want to misquote him. My wife, family, pediatrician and friends all agree - the earlier the better for my child.


James

[Jo Watson]

I feel very lucky that my daughter (now 19months) had
her lip repaired at 4 weeks as you would not know
now she ever had the cleft lip as the repair was so
good.


The palate was repaired at 9 months and this helped her
feeding immensly. She now sees a speach therapist
as every child is different and we will not know if
her speach will be effected for a while.


I think there are so many differing views on what it is bes
it is difficult for parents - I would say to go
with a surgeon who has done lots of repairs so you
know he is competent.


Good luck and it does get easier.

[CSt012392@aol.com]

My son is 7 weeks old today and was born with a cleft lip and palate. Dr. Magee operated on him at 6 days old. He repaired the lip and palate in one surgery. He is now eating from a regular bottle and even attempting to nurse. He looks wonderful and this is after only one surgery. I interviewed many doctors since I knew when I was 19 weeks pregnant that he was going to be born with this. Dr. Magee is the best. He is the nicest man as well. He gives out his home number to his patients and treats everyone like his best friend. He not only scores a 10 with skill, but also with bedside manner. That is extremely hard to find.

[sabrenajoe@cs.com]

My son is now nine years old. He was one of the first patients that Dr Magee fixed both the palate and lip at a very early age. He has had eight surgeries (some very minor) since he was born and are now getting ready for the bone graft.


I don't know if we will ever be able to determine if things would have been different if we would have waited on any of the repairs. I do beleive that each case is different and can be like comparing apples to oranges as far as treatment plans. My son had a very wide cleft which has made it difficult to correct. I have talked to other parents whose children have only had to have one or two procedures.


Regardless of what you chose, sticking with a group of physicians like the cranial facial team offers will provide the best care for your child. By having this team approach, each segement of care can be looked at by the whole with a lot less run around and mis communication.


Good Luck to you and your son.