cleft soft palate

[yvon]

Hi to everyone!

My daughter will be a month old on January 9. She was born with a cleft soft palate. I don't have any idea on what type of medication or surgery does she need on this but I want her to be operated soon.

Does any one of you knows if having a cleft soft palate will affect her in terms of speaking??? or anything more??? Please share me your experiences on this.

[gc0447]

Dear Yvon,

Hello. My name is Georgette Couvall (Dr. Salyer's patient: http://www.worldcf.org). How are you? Here is my Personal Story link:

http://www.worldcf.org/support_groups.cfm (Craniofacial anomalies)

I'm from Illinois. If you don't mind me asking, where are you from? Just wondered. By the way, here are two other Cleft websites that also have Message Boards:

http://www.cleftadvocate.org
http://www.craniology.org

Sincerely,

Georgette Couvall
georgettecouvall@hotmail.com (Email)

[Jeanne Buta]

Hello,

My daughter was born in 2004 with a cleft of the soft palate. Her palate was repaired @ 12 months. It is my understanding it is not advisable to have the soft palate repaired until atleast 9mo-12mo. This is the time when speech will be the most evident. Speech problems can vary with cleft palate babies. Because of eustachian tube disfunction in some babies, hearing loss can deter proper speech development. Some babies will develope nasal speech because of the palate not properly closing off the air. My daughter did have delayed speech. After her second set of tubes were in, her speech progressed rapidly. She now speaks in four or five word sentences. However, her articulation is poor at times. We work on articulation daily and are now seeing a great speech therapist. Her prognosis is GOOD!...hope this is helpful

Jeanne

[gc0447]

Dear Jeanne,

Hello. My name is Georgette Couvall (Dr. Salyer's patient: http://www.worldcf.org). How are you? Here is my Personal Story link:

http://www.worldcf.org/support_groups.cfm (Craniofacial anomalies)

I'm from Illinois. If you don't mind me asking, where are you from? Just wondered.

I wish the best for you and your family.

Sincerely,

Georgette Couvall
georgettecouvall@hotmail.com (Email)

http://www.worldcf.org/support_groups.cfm (Craniofacial anomalies)

[ireneor83]

Hi Yvon,

I too had given birth to a girl with soft palate in dec 06..I was so upset and confused.. It took me more than a month to accept the reality and move on..

We have gone to see the Cleft team in my country twice so far and the next appointment is in March to check her hearing and discuss whether there is need for the tubes to be inserted into her ears and approxly when she is scheduled for her cleft surgery..

We were told by the doc that my daughter's surgery will be when she is around 6 - 12 mths old depending on her development..

I understand that there is a possibility of her speech being affected. & that there is a high risk of ear infections (a possibility of hearing loss)... Hence, it is better for your cleft team to check on your girl on a regular basis.. to detect all possible problems early..

I can understand what you and your family is going through and the countless of questions you have in your mind... Don't worry, I'm sure you will find this website useful..

We can always exchange qns and information / give each other support when necessary..

Irene

[HollyBee]

Hi there, my son Graeme (Nov 1/06) was seen this week at the Plastic Surgeon. I was told that the tissue is growing well and that he could close it now but it was more favorable to wait. So we go back at 6 months old (May) and then it will be scheduled 6-8 weeks from there.

Graeme's doing well, he's still gaining and happy, we've got eczema troubles that are his biggest issue but we got into a dermatologist with the help of the plastic surgeon! Imagine that hey!

Take Care

[tkebino]

My son EJ was born(5/18/05) with a cleft palate and it was repaired around 10months of age. Unlike most people who find out at birth about the cleft palate EJ was 2weeks old when his was found.

We had tons of questions for the surgeon who closed EJ's palate. He told us that if the palate was not repaired then the sound of his voice would be very airy and raspy. He also stated that there are some words that can not pronounced with an open palate(ie da da).
It was recommend that EJ have a speech evaluation and he was a little delayed but we oped for no speech therapy and he is fine. I have learned that we will not know until he full speaks if there will be a problem.

EJ had no ear infections while the palate was open but once it was close he has had several. He may not need tubes but the adenoids removed. We learned from the ENT that only 1/2 the adenoids can be removed. This is because if the whole adenoid is remove it will effect the speech. What has caused EJ problem is that his adenoids have got larger and there is not room since the repair. This is a common thing and that there is no way of knowing. We use a steroid spray every night and he has been doing fine.

hang in there. This is a great place of support. You can handle it. PM me if you have other questions.