New Parent of Cleft baby & Cleft Myself looking...

[samjune79]

Hi, I'm a new parent. My son, Kyle, was born in January. He was born with bi lateral cleft lip & bi palate. I was also born with wide cleft lip/palate. I remember when I was younger all the surgeries and people visiting me. One of the things that really bothered me was how people would come up to me even at 10+ years after all my surgeries and say how good of a job the doctors did. This really hurt my feelings and I was really sad that they would say how much better I look (like I was totally ugly before). My son just had his lip repair April 2nd and is doing really well, but I am re-living all the wow's that people say. I know they are just being polite, and my son is only 3 months old and he will not have as many surgeries as I will, but I don't want him to be told by people when he is 5 or 8 years old that the doctors did a really good job. I really understand new saying that to him, but how do I tell my family and close friends to move on. So, my question is, what do you say without being rude or hurting your family’s feelings; mostly my mom. She insist on showing off pictures of Kyle's before and after (to be honest, she only took a few pictures of me when I was a baby and she hid them from everyone and gave them to me when I was old enough, so I kind of think she was ashamed and wants to make up for that in Kyle). Thank you for reading.

[jacksmom]

I know it seems like sometimes people say things before they think, but I just try to put myself in their shoes. It really is hard to decide what the right thing to say is, in our situation! I think people are just amazed at what wonderful work the doctors do now. Especially older people. Years ago, people born with clefts were left with horrible scars! So, just try and take it as a compliment! Kyle will know how much you loved him before & after surgery! You can just explain to him that the love his family had for him had nothing to do with the way he looked! Congratulations on a successful lip repair! It must look really good to be getting all of those compliments!
Allison

[gc0447]

For: "samjune79":

Hello. My name is Georgette Couvall (Dr. Salyer's patient: http://www.worldcf.org). Welcome to the group. How are you? Here is my Personal Story link:

http://worldcf.org/index.php?option=com ... &Itemid=39 (Craniofacial anomalies)

I'm from Illinois. If you don't mind me asking, where are you from? Just wondered.

Again, welcome to Smiles. I wish the best for you and your family.

Sincerely,

Georgette Couvall
georgettecouvall@hotmail.com (Email)

[samjune79]

Florida - Tampa Bay area.

[Heide]

Hi Samantha, just a note to say welcome to the group and congratulations on the birth of your baby boy. I agree with Allison's comments and find that it is just best to politely smile and say how blessed we are to have been given such a wonderful child. Heide

[Jeff Alterman]

Samantha:

Believe it or not, the results of cleft surgery these days is often better than it was 30 years ago or so. I have seen the results of one cleft lip and palate surgery performed in the mid 1990s on a boy and there was only a minimal scar on his lip. His nose was still crooked, but that will probably be corrected by the time he is 17, 18 or 19 years old. Some of the surgeries are so good that you can hardly tell that the cleft even existed.I know of a 23 year old male who was born with a unilateral cleft lip and palate (right side, probably severe) and the job they did with his surgeries was so good that if I wasn't told that he had a cleft, I would probably not know the difference.

Jeff Alterman at alterman156@verizon.net

[pkett2]

I can understand your feelings on tired of hearing about it all the time. I'm sure it gets old, but they are really just stating the facts, the Dr. just did a wonderful job & you & your son are beautiful! You weren't ugly before, but would you have wanted to stay looking the way you did? Everyone loves to say good things when our looks are improved! When we diet everyone tells us how great we look now, I don't think that they are saying ( Wow, you WERE really fat before) ha ha... Silly comparison.

As far as your mother & the pictures...when I first found out during my U/S that the baby was going to have a cleft. I did think to myself that I wasn't going to take pictures of the baby before surgery. I thought that I didn't want him to have to see himself like that. I changed my mind after I go over the shock. It's a part of him & I've taken pictures through the whole process. Clefts seem more common & we're all more educated about them now. I'm sure your Mother blamed herself for your cleft (I blamed myself for awhile). If your mother is making up for it. Good for her, you need all the support you can get. And what a perfect person than someone who went through it.

Welcome to the group. Post pictures of the little one. We love pictures!!!