Cleft Baby

Ashbaby

Active Member
Im a mother of a 5 mth old cleft baby. My DS was diagnosed with cleft lip and palate at 5 mth detailed scan.

I just want to start a support group for those parents who is going thru the same things. As I know cleft is 1 of the most common birth defect.

Hope to know more cleft baby's parent and hope to hear your experience.
 

rae

Member
hi ashbaby... my ger has a cleft palate too. but due to other medical complications, we only did the repair when she was 2+. unfortunately, she was one of the very few cases where it re-opened. with her other developmental delays and medical conditions, we are not going to do another repair as she is "too old" @ 5.5 years old.

are you seeing docs at kkh? they have a parent support group as well? i rem there is also another parent support group for cleft, but i din join either cos nothing to share.
 

Ashbaby

Active Member
hi ashbaby... my ger has a cleft palate too. but due to other medical complications, we only did the repair when she was 2+. unfortunately, she was one of the very few cases where it re-opened. with her other developmental delays and medical conditions, we are not going to do another repair as she is "too old" @ 5.5 years old.

are you seeing docs at Kandang Kerbau Hospital? they have a parent support group as well? i rem there is also another parent support group for cleft, but i did not join either cos nothing to share.

She only have palate? DS hv cleft lip and palate. DS just done 1st op, nope Im with NUH.

Gosh I feel for u. Maybe u can seek a second opinion with regards to the surgery.
 

epicurean

Member
Im a mother of a 5 month old cleft baby. My dear son was diagnosed with cleft lip and palate at 5 month detailed scan.

I just want to start a support group for those parents who is going thru the same things. As I know cleft is 1 of the most common birth defect.

Hope to know more cleft baby's parent and hope to hear your experience.
Hi Ashbaby,

My husband's colleague's daughter has cleft lip & palate. She has undergone surgery and I think she's around 2 years old now.

He's also active in Operation Smile (Spore chapter).
 
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Pops

Alpha Male
hi ashbaby... my ger has a cleft palate too. but due to other medical complications, we only did the repair when she was 2+. unfortunately, she was one of the very few cases where it re-opened. with her other developmental delays and medical conditions, we are not going to do another repair as she is "too old" @ 5.5 years old.

Hi Rae, I have just moved to Singapore from UK and have 7 year old daughter who had bi-lateral cleft palate. Just before we left she had her last operation to finally close the palate after 6 failed / partially successful ops between ages 2 and 5 years. Last op seems to have worked so don't give up.

I became (and still am) a trustee of the Great Ormand Street Hospital based charity CLEFT which funds research into the causes of cleft and techniques to improve the success rates of surgery for clefts. The surgical team we support train surgeons in techniques and carry out operations all over the world (from Venezuala to Bangalor) on individuals from babies to full grown adults - there is no age cut-off! Surgery becomes more difficult with increased number of ops, as the scar tissue makes it harder to graft skin. But with 7 ops under her belt my 2nd youngest is proof that peseverence pays off.
 

rae

Member
ashbaby & pops... thanx for your encouragement. my ger is actually a chromosome disorder with other medical conditions so she has gone thru several ops and some still "queueing" so we would like to shorten this "queue" as much as possible cos it is very traumatic for her to go thru her ops. the reason we din think the op is important is cos she does not feed thru the mouth due to swallowing disfunction. we are also not expecting her to speak due to her developmental delay. in actual fact, we din even expect her to be able to celebrate her recent 6th birthday as the doctors only gave her two weeks when she was born. for now, we would just like to keep her happy, and far far away from the hospital as much as possible! : )
 
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