Introducing my baby to strangers

[Jack]

My wife and I will have our third son in September. He has been diagnosed with a unilateral cleft lip. We have gotten a great deal of information from support sites, but still I'm a little concerned. I want to be prepared to show off my new son after he's born, but I want to be confident and considerate of the situation. I don't want to dramatize his condition, but I don't want to ignore the "elephant in the living room" either. What has worked for you experienced parents?

[Mommy7]

I was born in 1978 with a bilateral cleft lip and palate. My parents were unaware of the congenital birth defect until my birth. I was their first child, and it didn't matter what I looked like. They loved me passionately and took tons of pictures as if I were completely fine. Those pictures have been very important to me, psychologically when I needed to come to terms with my difference. Now, as I'm expecting my first child, and knowing ahead of time that he does in fact have the same defect, I think of my childhood and difference that much more. My parents never told me that there was any limit to my abilities. They encouraged me to do whatever it was that I wanted and do it with all of my being. I too wonder what it will be like to introduce my baby to strangers (or family for that matter) and my first instinct is to protect myself from hurtful words. That won't help. I just found out this Thursday, so I'm still in shock. My hope is that when my beautiful baby boy is born everything will pale in comparison to the fact that I have a child now who will be loved totally by his Daddy and Mommy. My parents didn't think about my differences, I was a baby and they loved me. I'm sure you'll be the same way. It won't matter in the end. People are cruel, yes... but just like your first two children, you ignore others and nothing else matters in this world but that beautiful smiling bundle of joy. janwelt@aol.com

[Susan]

Jack,
My now six month old son had his lip repaired in April, and will have his palate done soon. I felt some aprehension at first, but was amazed at the way people reacted to him. I have never heard a gasp, groan, or seen a flicker of dismay. Even strangers in a store focused on his chubby cheeks and bright eyes. Often I would say "He is a great eater, he has a special Pigeon bottle that helps with his cleft," or something to put them at ease, but didn't have to say anything much.
After his repair, we were so pleased with the results and wondered what others thought. We have run in to the same politeness. No one ever asks about his scar, or sees any difference in his nostril. I know the surgeon at Chapel Hill did a remarkable job, I think he looks great. But I also know that you can see the pink stripe below his nose. And people just seem to look past it and to be very kind. Maybe it is political correctness, but have faith even in strangers. And have patience with ignorance as well, as I did with the one person who suggested home schooling for my unrepaired son.

[Edie]

My 4 year old son was the only one with a cleft out of my 3 kids. My family was aware of his condition and were accepting. It took everyone including myself to get used to seeing him like that.with the hole on his lip. I would walk around the mall and people would be attracted to the 'little baby'. I know their first impression would be "What the heck"? I would immediately tell them what happened and they would feel sad for him which was fine. I would tell him he would have to go through surgeries and I think that telling them that I was so happy that he was not born with a deadly disease amde them feel better. You have to accept and try to be comfortable with the situation. If they just looked and didn't ask I would just smile at them as if nothing was wrong. It's funny how a little while after that my son looked so normal to me. This was him......this was his face. When he got the first surgery done, I didn't recognize him and he actually looked weird at that time. He looked more normal with a hole and in a sense I was sad that he was not the precious face I was used to seeing. It was a whole new chapter. I can say to this day I had a beautiful baby!


Good luck!

[Anonymous]

Dear Jack,
My name is Richard Rosenblum and I am a craniofacial surgeon and partner with Bill Magee in Norfolk, Va. As you have probably seen by the stories on this website, we do things a little bit differently than other surgeons. We repair cleft lips in the first few days of life because not only are the cosmetic and functional results better the frustration and tiredness you and your wife will develop in caring for a child with a cleft is virtually eliminated. We take care of kids from all around the country every week and would be happy to talk to you over the phone to explain the benefits of our repair. Feel free to email me your phone 3 and I will call you back. I look forward to talking to you soon.
Sincerely,
Richard
rsrosenblum@hotmail.com
757-627-6700 (O)
757-537-8086 (H)

[Nathan]

Trust Dr. Rosenblum (sp). He and Dr. Magee repaired my daughter's bilateral cleft pal/ lip at 10 days old. Very good surgeons!

[Calvero]

Just introduce you son the same way you introduced your other kids . If people are confused or shocked when they see him, just give a brief explanation of what your son was born with.


That worked well with my parents


By the way, congradulations!


Kim,
The Cleft Club,
<a href="http://cleftclub.cjb.net">http://cleftclub.cjb.net</a>

[boggs_wesley@hotmail.com]

you monster!!!! you are obviously not a very sympathetic father.... don't worry about YOU'RE gonna say to introduce your son... you should really wonder whether or not he'll ever want to introduce YOU! cleft lip is something that requires LOVE and sympathy and a strong lead to follow... after the first surgery, the scar will be almost unnoticeable.... i cannot believe that you would say these things about your unborn child!! you'd better shape up, "dad", if you want any kind of relationship with your child... it is not the elephant man's disease, it's not even a disease!... it's people like you that will make your child not want to go to school, because you amplify his insecurities... best of luck to you...

[Pat]

Crumbs, I'm jumping in here. I've only written once,
looking for info on support for lymphangioma.
Dawn was kind enough to respond.


I can't believe that someone on a list like this
would choose to respond to Jack, calling him a
"monster" for voicing his feelings. As a mom with
a child with a facial difference, I believe that
ALL family members need help in how to deal with this,
as well as the freedom to express both positive and
negative feelings, without fear of attack from
another group member. We all go through enough
anxiety without attacking each other.


Pat

[Anonymous]

Pat, you said it perfectly!

[Pat in Canada]

I think someone completely mis read your note. I don't know what exactly they saw in it that was so disturbing to them, but I was pretty shocked at that response. I read this as a father who is trying to prepare himself for some of life's changes as best he can. I commend you for coming here and seeking information, advice and just a welcome hand. We all want our babies to have the best -- the best shot at everything life can offer. And you want to be considerate and sensitive about your baby's cleft. Seems pretty darn good so far.
I think if you do and say what's in your heart, you'll be fine. "Hello, have you met our newest arrival? This is ..... Isn't he just the sweetest thing ever?" I'll tell you, it takes no time to puff up and be proud of our kiddos. children learn what they live, remember? If you are proud, he'll be confident. If you are hesitant, he will learn doubt. and so on.
Good luck, and I think you are off to a great start!
Pat (Peach/s mom)

[millerco@msu.edu (Connie)]

My first grandchild is due in 4 weeks and the doctors thinks the baby may have a cleft palate. My son and daughter inlaw live in eastern North Carolina. Could you tell me the name of the surgeon at Chapel Hill in case the baby does have a cleft palate and needs surgery? Just trying to round up as much information as possible if needed.


Thanks for you help,


Soon to be proud grandma

[stephanie]

Hello, first of you are not a monster, you are a worried father, and the person who wrote that probably has not even been through such a deal, My 1st child was born with a cleft lip and palate so Show that baby off! The stronger you are about this to other people, the stronger they will be and your child will be too! I still get the stars and stuff in stores at my daughter but it is young children who dont know! I applaud you for standing up and asking questions , I am sure you are a great father, God bless
A mother of a patient of Dr. Magee