Cleft lip and palate.

Julie - posted on 01/10/2009

Hello Lisa! Congratulations on the baby!!! My son was born in June '07 with a unilateral cleft lip. Even though the palate was intact, I was still unsuccessful at breastfeeding him. We used a regular bottle and then switched to a haberman after his surgery at 5 months. He's doing great now and looks wonderful. The surgeon repaired his lip and reconstructed the left side of the nose. It was strange to see him after his surgery - I missed the way he used to look! He was just so beautiful, cleft and all. It was a funny feeling to see him looking any other way. Enjoy and God Bless! Please keep the group posted on your journey!

Haven - posted on 01/09/2009

My daught Madi is 2 and was born with a bilateral CLP. I found out at 19 weeks and had her at childrens hospital, Vancouver,BC. They have a whole cleft team there, and she continually recieves care from specialists there. They gave me the soft plastic bottle with a long narrow nipple and a x opening in the top. It worked well, but they were hard to keep clean, you couldn't boil them. I tried regular gerber bottles, I just made a VERY SMALL slit in the nipple with a knife. It worked even better. I also pumped exclusivly for a year and a half. I had to stop cause of meds. I wouldn't change anything about my dughter, she's the mos loving, happy baby(toddler). I do however resent the fact that I couldn't breast feed. i would get so jelous watching other moms, I still do. Madi and I have a great bond, but I still feel that we missed out on the special connection. When she reaches for that bottle with a yerning in her voice, I wish she was reaching for me.

Kristiana - posted on 01/07/2009

Our daughter, Chloe, was born in August of 06.  We found out there was a possibility of a cleft lip two weeks prior to her birth.  Our doctor was very uninformed of what would happen with a cleft child, and the hospital hadn't a clue either.  Chloe was born with a bilateral cleft lip and palate, and her entire mouth was open to her nose.  It is very scary.  It took the hospital three days to figure out a way to feed her- and the Pigeon nipple saved us!  Chloe is now two and is fine.  The biggest thing to remember is that you will be fine and your child will be wonderful.  Ours has been a blessing every day.  Do the research and find the options that you want.  Also, look into Shriner's Hospitals.  Our daughter is a patient of theirs, now.  Her first two surgeries have taken place by plastic surgeons, but the cost and the stress of such has been difficult as we had no insurance.  Shriner's will take care of her cleft until she is twenty-one.  They're such a blessing to us!  Good luck!

Kristiana

Amy - posted on 01/07/2009

congratulations on your baby!  Good luck with the feedings....I used a haberman nipple as well, they are great!

Take care,

Amy

Amy - posted on 01/07/2009

Quoting Lisa:

Cleft lip and palate.

Hi,
My baby is due 30th December and i've been told my baby will have a cleft lip and could be a slight cleft palate.
Can't wait to meet my baby.
Be nice to talk to other mums.
Lisa. x

Michelle - posted on 12/10/2008

congrats my son had a cleft palate 2 the hard and soft we found out after he was born the help we got was 1st class ever1 was on hand from the start, i did have a probs feeding 1st of all but i think it was because i was scared but then i was given a haberman its fab use 2 get a few funny looks fom some but my daughter used 2 put them in their place. cody has just had another op 3 weeks ago hes doing really well am so pround of him. keep us all posted and enjoy your baby as they grow up so soon

Denise - posted on 11/24/2008

Congrats on your furure angel. We didn't know our son who will be 2 in January was going to have a cleft lip and palate until he was born. I was shocked at first but the mid-wife explained everything to us we were thankful that he was mentally and physically normal except for the lip and palate. THe hardest was getting the right bottle for him. We used a Special Needs bottle(haberman bottle) from I believe it was by Medela. THat was the best bottle yes it is expensive but I had gotten some from the speech therapist when they first wanted to see him to make sure he was feeding properly and a couple from the CMS (Children's Medical Services) clinic. Good luck with everything and we are all here for you if you have any questions or concerns.

Wendy - posted on 11/23/2008

It is so good that you know ahead of time. Our biggest issue was feeding- the hospital didn't really have any one there that could realy help us. Lauren was about 4 days old when we finally got to someone that could really help. The Pidgeon nipple worked the best for us- even then it was positioning it right in the mouth so that she didn't have to work so hard to eat. Lauren is 14 mos old now- she is doing great. She had her lip surgery at 3 mos and palate surgery at 9 mos.

I wish you the best of luck.

Kim - posted on 11/23/2008

congrats on the baby. just to let you know it will be scary at first. but everything is going to be fine. when i found out my daughter was going to have it i just prepared everything ahead of time. called the plastic surgeon found local chapters that have clinics for children with cleft lip and pallets. there are so many options you have now. also i was lucky in trying a new brand of the specilalized nipple. the basic one is called a haberman nipple. they work great but are costly and don't last as long. my daughter was very sucessful using a pigion nipple. they look like regular nipples but they have a hard side to act as a pallet. if you have any question feel free to write. good luck and enjoy the baby.