New mom with baby with Cleft Palate just wants someone to ta

[Rachel]

Hi, I just had a little girl a month ago and she was born with a cleft palate. I didn't even know there was such a thing until she was born and although everyone has been very good about answering my questions, I would still like to chat with someone in the same situation. I tried to breatsfeed and she couldn't do it. She could latch on but she couldn't suck. Her first surgery is set for April 23rd and her second when she is 18 months. I really would like to chat with someone, so if you would like to also email me at Rachel4113@aol.com.
Thankyou

[Calvero]

With the internet, it doesn't take long to find somebody . I know my parents are a little envious!


I have a list of mailing lists and message boards on one of my cleft sites where you share experiences and information with other clefts and parents of clefts:


<a href="http://calvero.tripod.com/cleft/info.htm">http://calvero.tripod.com/cleft/info.htm</a>


Kim,
The Cleft Club - <a href="http://clubs.yahoo.com/clubs/thecleftclub">http://clubs.yahoo.com/clubs/thecleftclub</a>
Born to be Cleft - <a href="http://cleft.cjb.net">http://cleft.cjb.net</a>

[Scardycat1@hotmail.com]

Hi Rachel,
I don't know how much help I can give you. You may want someone who is going through the same thing as you at the same time. I don't have a little one but my son was born with a cleft lip and Palate almost 20 years ago.We have been through it all. I also tried breast feeding and the same thing happened with us. I felt horrible, like I couldn't do the best thing for him and it was tough. You want the best for them. What I did do for a while was try to pump my milk trying to give him the nutrients. In the end it was much better giving him the bottle. Less stress on me and him. I tried all those special nipples too. But what I found worked the best was a simple premie nipple with a cross cut that we made ourselves. When it came time for cereal we made a little larger cut. I worked great. The first surgery for him was closing his lip, I looked forward to it but I also was a wreck over it.
When my son was bapitized I was walking out of the church, this woman stopped me and said, You will be going through a lot of heart ache, I have have a child that was born with one. I left the church thinking what is she talking about and what a terrible thing to say to someone who's child has just been baptized. It's a special day. What nerve. Now that I look back, I still think it wasn't right of her at that point, and exactly to this day I'm not totally sure but do understand a little. It is hard keeping up the strengh to go through the surgery's. I had even cried to my doctor because he was refusing to eat after one of his surgery's. I would also worry about his speech and what other kids would think. We have always been open and honest with him. Never treated him different.Except for his surgery's. Which he might be still a little spoiled there. Every time he had something done on him we would get him something special. Till this day he still jokes about how he gets something special when he has any kind of work done. He is now in his second year of college. An Eagle Scout,Holds the highest honor given in an organization in his Boy Scout council and has been all over the united states as a youth leader for the program. Giving speeches along the way. He was voted to the highest position in the Order of the Arrow also. He has worked as a counselor at a camp. The kids look to him for guidance and even the adults in the program hold high respect for him. We are very proud of him. There is a big future your little one, I can just imagine that even more is known now than 20 years ago and everything will be great for you and your little girl. I've never seen that woman again, but if I was to I would say, How proud I am of him and how wonderful of a person he is. And he hasn't given me any more heartache than any other person goes through with their own child that has no problem other then their attitude as a teenager. My thoughts and prayers are with you and your family. With your Love, And great doctors she will grow to a beautiful lady.

[RHONDA]

I TOO HAVE A CHILD WITH A CLEFT LIP. I KNOW HOW OVERWHELMING IT CAN SOMETIMES BE BUT MY LITTLE BOY IS DOING GREAT! HE HAS HAD SEVEN SURGERIES TO THIS DAT E. HE IS NOW 6 YRS LD AND QUITE A LITTLE MAN! I HAD ALOT OF SUPPORT FRM FAMILY AND FRIENDS, BUT IT MEANT ALOT TO ME TO HAVE SOMEONE TO TALK TO THAT HAS BEEN THROUGH THE SAME SITUATION. PLEASE E-MAIL ME T MSRJROBB@AOL IF YOU EVER NEED SOMEONE TO TOUCH BASE WITH OR JUST TO TALK! TAKE CARE AND ENJOY THAT BEAUTIFUL BABY!!!

[Trish]

First of all congratulations on the birth of your beautiful baby daughter. My grandson Dalton was born with a cleft lip and palate. Poor little guy was all one big whole in his face. My poor daughter tried very hard to breast feed but there just was no way as he could not suck at all. We did what one other person on the board did. Got a premie nipple and put a bigger whole in it....basically we just poured the milk into him and let him swallow. She rented a breast pump from the hospital so she could pump faster as he had to eat every 2 hours and with the store bought ones it would take too long. She was pumping for an hour and it was taking him and hour to get in 2 ounces. They wanted him to gain weight so he would be ready for his surgery. Then to top it all off he got colic..she was a wreck, afraid to eat anything at all except mashed potatoes cause those would not bother him as much. I will not go into details as it would take days on end to tell it all. He is now 4 years old and has had 3 surgeries. His lip looks wonderful and the palat came together well but it is not growing as it should which is causing speech problems but he has a wonderful team working with him. I guess my whole purpose for this message is to let you know that whatever is down the road for you and your child will all work out in the end....she will thrive and do well and you can get through all of it. Just know that others are out there wishing you well. It is sad but Dalton does not like to see pictures of what he looked like when he was a baby and at this point he tells us no that is not him..we do not push him to see the pictures, I am sure that later he will feel better about it. We have never treated him any different than his older brother and sister and he has done very well. So take heart dear girl and go forward as you and your daughter will be fine. I can be e-mailed at fish_lrac@msn.com if you want to write.

[Candy]

Hi, my daughter was born on Dec. 12th with a cleft palate also, not the lip though. I know how you feel. This came out of the blue for me too. I mean after all, I have 2 perfect little boys, why would she be any different?? Well, she is using the Haberman feeder, she's never hads anything else, I have tried to use other bottles to no avail. She got an obturator that our crainiofacial surgeon made for her @ 5 weeks to help her eat, it was taking her like 40 min. to eat an ounce and a half, she left the hospital eating that and was still eating that at 5 weeks, and still at her birth weight. Since using the obturator she's up to 100ml per feeing and in about 15 min. She weighed 8#10oz. at her 2mo. check up. I know how hard it is, I could go on and on. You can email me @ angelica1197@hotmail.com
Good luck!!

[connie lewis9]

Hi there!!
I completely understand how you feel, as my son was born with a Cleft lip just last year. His palate was intact, but the Cleft touched into his gum as well. His 1st operation was at 3 months of age to close up his lip. They did such a wonderful job, we were so pleased. The surgeon said to us before his operation to make sure to take alot of pictures of him with his Cleft, as after surgery we would quickly forget what he once looked like. He was right!! Our son is now a beautiful baby!! His surgeon also told me something that will stay with me always. He said that 'if this is the worst thing your son has to go through, he will come out a winner' He is 16 months now, with no problems at all. His hearing is great, he has no problems with speech (as far as we can tell) and he looks great. I know we have a few operations ahead of us, but we know that he will have a great future! Even if they could not do another thing for him, that would be ok. I remember just before his operation, I was out shopping. My son was not a very good sleeper, so once he did finally fall asleep I would cover his head with a light blanket (to keep the light out). One lady came over to the stroller and said 'OHHHH look at the baby'. While saying the above sentence, she pulled the blanket back to reveil his face. When she saw him she had a complete look of horror on her face. Without saying another word, she turned and left. I will never forget that look, but I am also greatful to her for that. She made me even more determined to show him off with pride. Before and after the surgery.
I was lucky, I was able to breast-feed him without any problem. As he was my second child, I had a little practice in that department. I could not however get him to drink from a bottle until approx a month to a month and a half after the operation. Once he took the bottle I gave his a soother. It really helpes to strenghten the muscles in the lip. I've also tryed to get him to make sounds that require his to shape his
mouth in a 'o' shape. This too helps the muscles.
With the wonderful new procedures and fantastic Doctors doing them, our children have a bright future. They will have a few challanges ahead, but no more then any other child...only different. Love your baby, be proud of her and know that she will be beautiful...both inside and out!!!