Cleft Lip / Palate Support Group

Hello and congratulations on your twins! I have a three year old son who was born with a bilateral cleft lip and palate. I also have a one year old and I am having another one due on halloween.(all boys!) anyways, we didn't see my sons cleft in the ultrasound so it came as a big surprise. If I would have had the oppertunity of knowing ahead of time I would have definatly researched the condition and maybe even met with sergeons. We did not like the first surgeon we met with and decided to look for another one who we really liked and I am so greatful that I didn't pick the first one because our surgeon has done a wonderful job and you can tell that he really cares about our situation, thats something that the first surgeon was lacking. I have info. on how to order a few different bottle nipples so let me know if you need any of that. Most people use the haberman, we started with that one but our son liked the pigeon better. I remember when I first seen my son, I saw the cleft and had no idea what it was, I was of course very shocked an scared, not knowing what was wrong with my baby. Then they explained that it will be easily fixed and I held him and I was able to look past the cleft, and there he was, the most beautiful little boy that I had been waiting for my whole life. Now the cleft is such a little part of him, he just has a small scar, and of course some surgeries to go through which is hard, but he is a very handsome little boy and he has got the greatest personality. I wouldn't trade him for anything. I really don't see him any differently then my other children. good luck with everything and feel free to contact me anytime.

i have a 7 month old who has just went through lip surgery in may. He is doing great. I have learned that u want to take the advice given and do what u feel is best a step at a time. When my son was born every doctor, nurse, and pathologist all had different ways of handling the feeding, It was really frustrating at first but once we got the hang of it and learned a few tricks of our own it went fantastic.

Congratulations on your twins! I had a son born with a cleft lip 17 years ago. We did not know about it beforehand so it was a bit of a shock, but within seconds my husband quipped, “Well if they can make Cher look 20, they ought to be able to fix this!” He set the tone for how we handled it. We found a surgeon who specialized in clefts at a teaching hospital, (a hospital associated with a medical school) and we could not be happier with the results. His first surgery was at just under 3 months old. I saw the doctor’s pre-op sketches and they were quite extensive. He cut inside the lips on both sides, up to inside his nostril and around the outside of his nose. Our son’s second surgery was performed when he was a two year old. He handled both surgeries extremely well. I could not believe how quickly he healed. He has never suffered from nasty comments from classmates or teammates. He will have one more revision surgery in the next year or so. He is a bit self-conscious when having his picture taken, but other than that, he is quite comfortable with himself and his looks. We never made any issue of his cleft, and when strangers asked about what was wrong when he was younger, we always answered that he was born with a cleft lip in a lighthearted way. Even though we would be seething inside, we never let on that we were upset by these questions. I think that this helped our son accept his cleft as something that was no big deal. My recommendation would be to find a doctor who does nothing but these kinds of surgeries. I flew to a big city where I found the surgeon that I wanted to do the surgery. Last year when we took our son to a new cleft doctor, (we have moved across the country since his surgeries), she immediately knew which surgeon did his original surgery because of his near perfect ‘cupids bow’. I think your son will be fine as long as you find a good surgeon. As for you, don’t stay inside and hide him. Force yourself to get out as soon as possible after your twins are born, and you will soon find it gets easier and easier. For me, it was helpful to have my husband with me at the beginning because I was afraid I would start crying if someone said something. You will be fine and this son will be every bit as precious to you as all of your other children!