Daughter born 11 June with cleft palate - need to talk

[jtolivieri@netscape.net]

My daughter has a bilateral cleft palate that includes the
hard and soft palate. She is seven weeks old and already is
scheduled to have tubes put in her ears. I realy need someone to
talk to who understands and can provide some support. Thanks,
Theresa

[vork1@aol.com]

I have sent you an email, I hope to hear from you soon.

[andrea_showalter@yahoo.co]

My daughter was also born with a cleft involving the hard and
soft palate. She is now 14mos old and is doing wonderful. Please
feel free to e-mail me if you would like to talk

[kelly]

I just saw your post...I had a baby on June 4th with a cleft
of the soft and part of the hard too! It has been incredibly
stressful. I also have a 3 year old. I don't even know how we
made it to the 2 month mark. It all seems like a big blur (his
first 2 months). How's feeding going? That seems to be the most
stressful part. Blake is nursing YEa! With a peridontal syringe.
I hope you have support from family, that seems to help. I think
sometimes that i must be all alone in "this" but then I
read your post and have to chuckle. While I was agonizing with my
new baby, so were you. So maybe were really not so alone:-)

[buterflytatoo@hotmail.com]

Hi there. I'm 19 and i was born with soft cleft palte that extended to the hard palate. My parents kept it closed from me till i was 16 or so. I recent them for that. I only had 2 operatyions when i was a child and they were successful. I still talk funny and i would do anything in the world to improve my speech. Unfortunetly theres not much i can do. Just make sure you have a good doctor to do your childs surgury. i am not sure what causes my nasal sounding voice, but i still have hope that one day it will change

[Tammy]

My daughter Amy was born missing all of her soft palate.She had her first surgery at 10 months.She has cronic ear infections and severe fevers when she gets sick.She is quite the joy to have around though.Just insure that you get you child into a speech program as soon as possible.Amy will be 3 in August and her speech although coming along is
delayed.Make sure that you have a support system in place.I didn't have much support and it has made it difficult some times.Good luck. Everything will work out.

[michelle foster]

my son was born in February with cleft lip/palate.
it was very frightening. there are alot of mixed emotions. he is scheduled for surgery on April 25. if you need to talk, email me at insane_momof3@ivillage.com.

[mom who daughter been the]

it is not easy but it gets better or you learn to live with it. I'm really not for sure which one my daughter has had more surger on her ears than we can remerber and still has more to go. You have to believe in yourself and god and do your resarch I'm not sure how much help I will be but some times it just help to talk you can email me at starll26@yahoo.com I hope every works out for you and your child

[mom who daughter been the]

it is not easy but it gets better or you learn to live with it. I'm really not for sure which one my daughter has had more surger on her ears than we can remerber and still has more to go. You have to believe in yourself and god and do your resarch I'm not sure how much help I will be but some times it just help to talk you can email me at starll26@yahoo.com I hope every works out for you and your child

[joanndanelski@netzero.net]

Our 4 grandchild was born on August 7th, 2000 and she has a bilateral cleft palate. We were all devastated to hear this and it broke our hearts to see her. None of us was aware of such birth defects, other than hearing about them. We had never seen a child with a cleft and we were just not prepared. We spent lots of time crying and searching for information. Our little Mallory is now 10 weeks old and is doing great. She is almost 10 pounds and she doesn't think there is anything wrong with her. And we are all doing better. I can't say that we don't have concerns, and still worry about what she will go through, but.....we love her and she is building a strength in our family that, I believe, is going to make us all stronger. I am a cancer patient, and when I was diagnosed with the cancer, our world was pretty much tipped upside down. We have two sons and they were pretty scared about what the future would hold for us. I am a non-smoker and had a spot in my lung........I had felt fine.........when they did the surgery, they found the cancer throughout my lung and ended up removing it. We were devastated. I survived and we were getting adjusted when two years later, they discovered the cancer in my remaining lung. Once again, we were devastated. But now, I am convinved, God allowed the cancer to help make us stronger.................that was 8 years ago. My tumors are still there and occasionally they grow but are growing at such a slow rate that they do not cause me any problem. We have three grandchildren that I babysit for and just adore. When our Mallory was born...........we were presented another challenge. But, I know we can get through this. Feeding is a problem and our son and his wife spend most of their time just caring for little Mallory. They have two other daughters. In fact, when Mallory was born and we got to the hospital, everyone was kind of sad, and I was upset......I thought they were sad because they had a third girl.............later I talked to my son about that. He said when he saw Mallory's face, the farthest thing from his mind was what sex she would be......he just was not prepared to see the cleft palate and I think he was a little in shock. They have a long road ahead of them with lots of stress. But I know God does not make mistakes. I wonder why He allows such things when He is a God of healing and love, but I know we will understand this, too, someday. It is not meant for us to understand now and that is why they call it "faith". We have to just believe it is part of life's plan for us and that good can come from it. I know it did in the case of my cancer and I would not trade a thing in my life. Your child is a precious gift. And as natural as it is to feel saddened by the extra care it is going to take to provide for this baby..........this baby is trusting you to do just that. And this baby will love you unconditionally. We hope you are doing okay and know how hard it is. We watch our children struggle with this. You can't get through it alone, so don't be afraid to reach out and let others know your hurts and let them help you. That is what this life is suppose to be about...caring about our fellow man. If we can be of any help, write. Our little girl will go to the Mayo Clinic in Rochester on Nov. 1st for her first surgery. We are all very nervous about it. I am staying home with the other girls and my daughter-in-laws parents will go with them to the hospital. We think it is better for the girls to be home than at the hospital.......at least this first time. Her second surgery might be before Christmas at which time she will need to stay longer and we may all go then, or take turns being with mom and dad and Mallory. We'll see. I would guess that your baby is ready for surgery. They say 10 weeks, and 10 pounds. Do let us know how you are doing............we would love to share.