Cleft Lip/Palette baby

sherreen

Member
Hi,

I just went to seek for 2nd opinion at NUH with Dr.Lynne Lim. I'm very satisfied with her service as I related to her on my daughter's case at KKH. She suggested I do some hearing test at NUH..and my daughter did yesterday. I would said it's quiet detail as they test both my gal's ears and at what level she can hear. Now I am clear that my daugther's hearing is at moderate level which is 50 dB..while they expect child hearing to be at 20dB. So Dr suggest to give some medication to clear the fluid and see what happens. If it doesn't clear up the fluid in her ears, the next action would be grommets insertion. She also said to put in a bigger grommets rather than smaller size to prevent it from coming out.

I also consulted the speech therapist and Dr. Vincent today on seeing another ENT doc at other hospitals...and they are allright with it..as long as I bring along copies of the test result.

I think I would continue to see Dr. Lynne Lim for ENT in future...she's more detail and explain clearly to us rather than Dr. Henry Tan.
 

mummykidz

Member
Hi Sherreen, can i check with you whether the hearing test conducted at NUH is same as what is done for KKH? My child is 2yr+ now and still fail his hearing test in KKH. Fluid behind his ears..went through a detailed test once and grommets inserted before. He had a cleft palette repair when he was much younger and get flu quite easily thus causing fluid to build up. So everytime we go back KKH, the simple hearing test always fail but he can response to our calls and have reactions to sounds. However, he is speech delayed not sure whether due to his hearing capability or his cleft palette repair after effect. So if he manage to clear his hearing test, then we know where the root of the problem is and can work on it. He is on speech therapy now actually but do not seem to be of much help.
 

sherreen

Member
Hi Sherreen, can i check with you whether the hearing test conducted at NUH is same as what is done for KKH? My child is 2yr+ now and still fail his hearing test in KKH. Fluid behind his ears..went through a detailed test once and grommets inserted before. He had a cleft palette repair when he was much younger and get flu quite easily thus causing fluid to build up. So everytime we go back KKH, the simple hearing test always fail but he can response to our calls and have reactions to sounds. However, he is speech delayed not sure whether due to his hearing capability or his cleft palette repair after effect. So if he manage to clear his hearing test, then we know where the root of the problem is and can work on it. He is on speech therapy now actually but do not seem to be of much help.
Hi,

It's not the same test...the test my gal did in KKH is called
1) OTO- Acoustic Emmision
2) Impedence Audiometry
The test my gal did in NUH is called
1) Tympanogram/Reflex screen
2) VRA
KKH test only give the result pass or fail...but NUH gives the level of decibels the child can hear....you check your billing then you know what test they do
 

mummykidz

Member
Hi Shereen, thanks for the info. Yep, you are right..we did the pass fail test which always show fliud behind the ears... The NUH test , does it require child to be drugged to sleep or GA?
 

sherreen

Member
No..it's more of the child responding to the sound. So no GA needed. Since she's two years old..she can do the same test like my gal did in NUH
 

babypinkme

New Member
Hi... I due to deliver end of nov and on 20 weeks scan, we discovered that baby had unilateral cleft lip and palate as well.... Since the date coming closer, I always feel very scare for what to do and how to face it... Went to KK for consultation and counseling once and the staffs there are quite friendly but still pretty clueless of what to expect...
 

feli

New Member
Hi! Not sure if this thread is still active...
I just had my detailed scan yesterday at 23 weeks and they found my girl to have bilateral cleft lip and palate...
Also did the amniotic test yesterday. Results will be out in 2 weeks...
 

sherreen

Member
Hi feli....My gal was born with cleft palate. We never did any detailed scan as my husband disagree to do it. We found out she had cleft palate when she was born a few days later...caught unprepared...journey was tough but I was glad hers was just a minor one compared to other defects. Once repair the cleft..she's like a normal children..
 

feli

New Member
Hi Sherreen, thks for sharing. So far me & hubby have decided that we can handle the cleft lip & palate.
Now awaiting amniotic test results for any other problems... Becos we are not prepared mentally and financially if there are other major problems. I just hope I will not need to make any difficult decisions in 2 weeks time... Will be making appt to see Dr Yeow next week.

I just want to add that I admire all the mummies here. I hope I can be as brave as all of u.
 

sherreen

Member
Dr Yeow is nice doc..very calm and confident. When my gal had her surgery...we thought she had fistula as the stitch didn't form properly...he assured us it's not fistula ..but just an ulcer. At least you are prepared...and have all the info you need like using special feeding bottles.
 

feli

New Member
Hi mummies, can I check with u all do the doctors give anything for scar management after surgery? Eg. silicone gel
 

lkaren76

Member
Feli, no gel , the most effective way is the massage. The nurse will teach you how to do it.
No worries , if you need help, u can always contact the nurse. They are very helpful.
 

karelia

Member
mummies, anyone of you is a member of Cleft and Craniofacial Support Group at KKH? i filled in a form some weeks ago, but I didn't get any reply. i wonder if the group active or inactive.

my boy has a cleft palate and he just underwent a surgery at 9 months. he is still drinking diluted milk and has been losing weight :(
anyway, he is now a private patient. i am wondering if there is a way to downgrade to subsidized patient.... sigh, i wish i went through the polyclinic route for the referral.

thanks mummies!!
 

sherreen

Member
Karelia,

Can you ask Josephine from KKH Cleft department regarding the downgrade? She may be able to help you with it and advise you.
 

kelly_ks_tay

New Member
hi there... my ger has a cleft palate among other med probs too. you can approach the staff at KKH's cleft centre, they will be able to ans all your questions, and you can also visit them. there is a parent support group as well. you can contact :

- josephine tan
craniofacial centre coordinator
tel : 63945034 or hp : 91003978
email : Josephine.Tan.CH@kkh.com.sg

or

- joanne cheng
specialist nurse & research coordinator
tel : 63945035 or hp : 91800186
email : Joanne.Cheng.SH@kkh.com.sg


on a personal note, you might want to consider doing a choromosome test just in case your child has a genetic disorder, which my ger has. a lot of genetic disorder babies have cleft probs.

you can also pm me if i can help with anything else.

thanx, are.

Hi, i am new to this forum..... me and my wife have a baby with cleft lip...

She is thinking of aborting it due to the facts that she is mentally unprepare to accept this baby and also the financially unprepared for this outcome..

I wonder if there is any help i can get here or anywhere?
 

Ariel82

New Member
kelly_ks_tay don't do it! The child is very very normal and will be fine after surgery. Finances wise I can honestly say it's manageable. The consultations can be paid using the CDA account and govt also gives I think 1.5k into the child's CPF which you can use to pay medical bills. Your/your wife's CPF can also be used to pay for the operations. It's very very manageable... There's a whatsapp support group of some parents...If you want to join let me know.
 

kelly_ks_tay

New Member
Hi ariel
kelly_ks_tay don't do it! The child is very very normal and will be fine after surgery. Finances wise I can honestly say it's manageable. The consultations can be paid using the CDA account and govt also gives I think 1.5k into the child's CPF which you can use to pay medical bills. Your/your wife's CPF can also be used to pay for the operations. It's very very manageable... There's a whatsapp support group of some parents...If you want to join let me know.

Hi ariel82,

I would like to join that group chat u have so i can get more information on wat i can do after the baby is born.... and would like to meet any whose baby has a cleft lips as well...if its possible
 

Ariel82

New Member
Can you PM your handphone number? My gal has cleft palate only but there's another mummy whose kid has bilateral cleft lip n palate who would be happy to meet you and your wife.
 

sherreen

Member
Kelly,

It's not the end of the world. My gal born with cleft palate..we were caught unprepared...and I was depressed when she was born. But look around you, they are some even worse than having cleft problem like heart problem or even other sicknesses....once surgery done for cleft....the child is very very normal like what Ariel said...no one knows she has cleft palate problem.
 

romans831

Member
kelly_ks_tay don't do it! The child is very very normal and will be fine after surgery. Finances wise I can honestly say it's manageable. The consultations can be paid using the CDA account and govt also gives I think 1.5k into the child's CPF which you can use to pay medical bills. Your/your wife's CPF can also be used to pay for the operations. It's very very manageable... There's a whatsapp support group of some parents...If you want to join let me know.
 

Crystal2609

New Member
I am 19wks pregnant, just went for my FA test and was informed my baby is facing the same medical condition.
I do not know how severe his condition is yet and will be going for the 2nd ultrasound test later.
Really pray that I have the strength to go through this as my husband is out of town.

So glad to chance upon this forum and garnered so much emotional support from here.

Pray that everyone is safe and sound with their angels :)
 

nix_lag

Member
Hi, would like to check if anyone had their babies cleft condition follow-up by NUH? My 9mth old is currently following up there.. was wondering if i should do it at KK? in dilemma.
Was following up at NUH as my gal had a heart surgery done at NUH when she is one mth old and heart surgeon recommended its better that for all her condition follow up at one place, hence we dropped KKH cleft appts.

And also does anyone has experience of flying on plane with a unrepaired cleft palate baby? Is it safe for her?
 

jotan33

Member
Dear mummies,
I just did my detail scan ystd, was told my baby hav cleft lip.. Ask to do another scan this coming wed. I'm pretty lost n upset now.. I have initially decided to giv birth at private bcos of I'm visiting a pte practice gynae. Now I'm nt sure shld I chg n giv birth in KKH instead, so subsequently easier for us to arrange my baby surgery.. I'm too worry if the pte hospital nurses r train to handle such baby in terms of feeding.. Though I am only 20wks pregnant, i am alrdy worried hw will the cleft lips affect my baby.. I know I shldnt feel upset but just can't control my tears.. Mummies can you help advise me??
 

roaring

New Member
Hi is this thread still active? Went for my scan test and was told that my child has a cleft lip and potentially palate. I'm still in denial and despair. Going to have another scan by a specialist on Monday. Is there any mum who is currently going through the same? Ive read up quite abit last night... can't imagine that it will involve a series of surgeries. Will all cleft lip kids need speech therapy or at risk of experiencing hearing loss?

Please help.. thanks. Do miracles happen?
 

zard

Member
Hi is this thread still active? Went for my scan test and was told that my child has a cleft lip and potentially palate. I'm still in denial and despair. Going to have another scan by a specialist on Monday. Is there any mum who is currently going through the same? Ive read up quite abit last night... can't imagine that it will involve a series of surgeries. Will all cleft lip kids need speech therapy or at risk of experiencing hearing loss?

Please help.. thanks. Do miracles happen?
Hi are you still active here? I would like to know more as my unborn bby boy have bilateral cleft and palate . Do PM me ya :)
 

Aaron1980

New Member
kelly_ks_tay don't do it! The child is very very normal and will be fine after surgery. Finances wise I can honestly say it's manageable. The consultations can be paid using the CDA account and govt also gives I think 1.5k into the child's CPF which you can use to pay medical bills. Your/your wife's CPF can also be used to pay for the operations. It's very very manageable... There's a whatsapp support group of some parents...If you want to join let me know.
Hi can gave me the WhatsApp support group? We are very down with stress with the medical bill that we have to face and the health of baby. Thank you.
 

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