baby having both lip and palate

Reagan - posted on 11/07/2009

Amen! I had a chruch freind tell her kiddo that my child had a hole in her mouth (Rylee is a cleft palate not lip so it's not visible) but the whole time thery were at my house the little girl was saying "I don't want to see her." I cried and cried. That was what I was most afraid of that people would think she was different. I hope that your sons classmates are not continuing to be rude and all is going well for you and your little blessings.

Melissa - posted on 10/22/2009

I actually have 2 children born with a cleft. The 1st had a cleft lip and palate and the other just had the cleft lip. When we had our 1st son, i was worried, but it wasnt a big deal. My soon to be ex husband also had a cleft lip and palate. we have found that it runs in his side of the family. But only in males. A 1 1/2 ago we had a daughter and she was perfectly fine. When it comes to surgeries, it is very hard. My oldest is now almost 8 and well the kids pick on him in school cause his lip does look different then other kids. So he has actually asked his surgeon to fix it. I dont look at my children any differently. They are perfect to me and that is all that matters. You just gotta be more protective, when it comes to other kids being mean.

Reagan - posted on 10/19/2009

I understand about the hospital feeding issues. Our hospital did n't know how to feed our little one either. We tried the haberman at first too. Try the Mead Johnson cleft Lip/palate nurser with a regular nipple. Just squeeze the whole time your little one is sucking and it works like a dream. Your cleft team should be able to give them to you FREE and they are much easier to deal with than the haberman. I was skeptical because we even tried the mead Johnson bottle in the hospital to no avail but it works the key is the regular nipple. Maybe it will work for your child too. I hope things are going well for your little one. Let us know how things go.

Bessie - posted on 09/17/2009

i really do wish you the best of luck!!!

Angela - posted on 09/14/2009

we suspected that our son might have a cleft lip and palate on a 3d ultrasound. but it was 100% noticeable, cause he always had his hands by his face.

when he was born august 3rd 2009. i cant say i was shocked i was scared cause i have a bilateral cleft lip and palate myself i have had 52 surgeries and im still not done. anyways with Torsten the scare was the hospital didnt know there head from there ass and werent prepared on how to feed him, they were going to send him to childrens hospital in vancouver bc, to be dealth with there, i was terrifed as i have a 7 yr old special needs son at home, financially i didnt know how me and my partner were going to get there or where we were going to stay. it was horrible, untill the one nurse who did her homework and read my file and it said possible cleft lip/palate, and she ordered some haberman bottles and nipples. and they have been amazing, Torsten is 6 weeks today september 14th, he was born at 8lbs 10 oz and hes not almost 12 lbs. hes feeding well, were going for our first consult on the 22nd it will be interesting to see what the doctor has to say and see where its all going. wish us luck

Lisa - posted on 08/22/2009

hi bessie, not been on here much recently so i've only just seen your post. i live in manchester, uk. our second daughter was born with a cleft lip and palate and like you, was diagnosed at my scan. we were put straight in touch with the cleft team who were brilliant. I'm so glad that we found out before she was born as it gave us time to prepare ourselves and others for how she may look. it was obviously a big shock at first but the more info and support you get the easier it is. add me as a friend on fb and we can chat more if you want. hope this gets to you before babs is born. good luck xx

Bessie - posted on 08/04/2009

yes we have chose a team they are all the way in dallas though which is almost a 2 hour drive for me in a small town called tatum texas near longview and we are not sure yet if it is both the palate and the lip but we are very sure that it is at least the lip . we also know that his frist surgery will be when he meets both 3 months and 10 lbs not till then though and that will be for first lip surgery to just try to make it look a little better

Reagan - posted on 08/04/2009

Rylee has a cleft palate. From what I have heard it depends on the cleft palate team when they do surgery. For palate my team recomended that we do surgery at 18 months. Right now Rylee is almost 11 months. The count down begins at 12 months for me. Have you chosen a team for your little one? Where do you live? I live in St. Louis.

Bessie - posted on 07/16/2009

my son has not been born yet but we found out at our last sonagram that from what they can tell he dose have both a cleft lip and palate right now im really feaking out but it has really helps that i have had just a little notice and i have got to do a lot of talking about it but im not sure that any of this is really going to hit me till he gets here and i even seen it on the sonagram so i know at least he dose have a cleft lip i dont know just how they can tell about the palate thats still very off for me. is this her first surgery ?and dose she have both

Reagan - posted on 07/14/2009

Well I found out when I was being sewn up from my c-section. I just thought....well clft palate that's not life long or debilaitating and she's crying, it's all good. Then in the aftermath there were many more emotions. Everything was great til she lost a lot of weight and we had to stay in the hospital. She also had to be on a billi bed. Nursing was not an option so I pumped and it got much harder. I ran the gammit of emotions, anger, sadness, depression, grief....thank God that we got to go home because my Mom and Dad came down and I talked out the emotions and was MUCH better. It was still a struggle though. Rylee choked a lot the first three months of her life and that was scary. Also pumping was hard but I was determined. I read a book about cleft palate kiddos and it talked about stages that all mothers go through. It was so helpful becuase then I could see that I am not the only one who felt those things. It did not take long to snap out of it though and I adore my little girl. As we get closer to a year and then eighteen months I am nervous for surgery but also hopeful and prayerful. How did you feel? Has your little one had surgery yet? How old is your little one?