Newborn with Cleft Palate

[richardkprice@hotmail.com]

Hi,
our beautiful new daughter, Nerhys (24/5/00), was born with a complete bilateral cleft. She has most of her hard palate and no cleft in her lip. She does have almost no soft palate though. They say that the think that they will operate around 8 months old. We do not see the specialist team until late in the coming week.


We were just wondering about such things as feeding, speech therapy and the like. We are currently using a squeeze bottle and a cleft teat. We still get a reasonable amount of regurgutation back through her nose and she seems to get hiccups at least every second meal. Any help would be appreciated.


Thank you


Richard Price

[isabellasmum]

Hi Richard


Congratlations on the birth of your daughter! You have cosen a beautiful, unusual name for her. My daughter was born 18/1/00 with a unilateral cleft of the soft an hard palate. She will be having surgery in October -- so I can't help much with information about speech therapy. We use Mead Johnson squeezable bottles and had many of the problems you describe. I found that over time the regurgitation lessened considerably. I find that she still dribbles a bit out of her mouth while she eats, but the nose "leakage" is virtually nonexistant. She does tend to spit up A LOT -- I think because she swallows extra air. I was told by our cleft nurse to burp her after every ounce and that does seem to help. You will get used to your daughter's eating quirks and she will improve with practice. It seems like just yesterday we were thrilled when Isabella drank an ounce at each 30 minute feeding and now she can gobble 6 - 8 ounces in the same amount of time.


Isabella also developed colic because she swallows so much air and we found that giving her Ovol drops (infant anti-flatulent) works wonders. Check with your doctor.


Good luck with your team visit. My email address is cdino@sd45.bc.ca if you would like to keep in touch.






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[speech]

likely your daughter will see hearing and speech specialists on all team visits and most states have a early childhood program that you can enrolled your daughter in and an early childhood specialist will come and work with your daughter. They can help you spot any troubles with speech. My son was born a bilateral cleft palate ten years ago. From birth he was in a program called birth to two(we live in Illinois, it might be called something different in your state) The lady would come every week and she would bring lots of toys and she would just play with Nick and get him to talk and work with him on his sounds. After age two we enrolled him in an earlychild program that was much like pre-school. He also had one-on-speech therapy. Then once in school he also had one-on-one sessions with the speech teacher. There is lots of help and the earlier the better. Hope this helps and congrads on your new baby!!! Sue

[kristaclinton@hotmail.com]

Hi Richard


Congratulations on your new daughter!!! Is this your first? It's such a beautiful experience, treasure every moment!!


Our first and only child (so far!!), Kaylee, was born 11/22/99 with a cleft of the soft palate. We used the haberman bottles from Medela and that worked best for us. The first month of her life all we did was worry about feeding and what was to come. We finally moved past that though and just enjoy her now. She had her operation May 9th and it went very well. She is moving along fantastically.


I was also born with a cleft of the hard and soft palate. Fortunately for my mother I had no feeding problems. I did have chronic ear infections and had tubes put in (so did Kaylee during palate repair surgery). I also had some speech problems but you would never know it now. I don't look any different or have any kind of a different lifestyle now.


Your daughter will have a full and healthy and happy life ahead of her. I know it seems tough right now but you will figure everything out and a year from now wonder what the fuss was all about.


Feel free to email me at Kristaclinton@hotmail.com
By the way, where do you live?


We are all praying for you.
May many happy days fall upon you.
Krista

[heins@myrealbox.com]

My daughter was born July 1998. She had a cleft of the soft palate and a little notch in the hard palate. The palate was repaired last March. Shortly before her repair we started her on baby food. She was good at sneezing it out her nose. We had her try baby food so she would be used to the taste before surgery so we could get food into her after surgery. She refused to take anything from a bottle after her surgery and we were allowed to feed her with a spoon as long as we were careful.


With reguards to speach, our daughter is almost 2 and not saying many words yet. We started teaching her sign language so she could communicate with us while she was working on speaking. I recommend this. It has helped my daughter be much less frustrated communicating her needs and wants to us. It is amazing how fast children can pick up sign language.

[richardkprice@hotmail.com]

We probably will teach her sign language. But more for her brothers benefit. He has an epileptic aphasia nad when he has a run of seizures he is pretty much deaf and mute. The only way he has to communicate is through sign.

[Geraldine]

Hi Richard.
I found it very difficult at first to deal with my daughters cleft palete. She is now 4 years old. She has seen a speech therapist about 5 times, and in my opinion she is doing fine. She still has pronounciation difficulty but I find she improves every couple of weeks. I also find that interaction with other children helps her speech. She will begin her second year of playschool. As far as when she was a baby, I too experienced the food through the nose etc, as well as her gaging on formula and turning blue...but I found it helpful to position her at about a 45 degree angle when she slept...of course this is something you would want to discuss with your doctor, especially since I can't remember if my doctor consented to that. If you would like to talk e-mail me with your questions and I will let you know my experience with my daughter. God Bless.