Cleft Lip/Palette baby

ryudolow

New Member
Hi,

My baby has went throught Ultrasound and confirmed that he has Cleft Lip/Palete. Any advice what operation he need and also the cost?
 

are

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.
 

ryudolow

New Member
Hi Are,

Thanks for fast reply.
We went though 3D scan at NUH second and confirm Baby is healthy except having cleft.
I am just worry of the medical fees now. I aware that two operation needed for lip and cleft. May I know how much it cost for your ger?
May I know how to PM as I am new in this forum.
Have
 

are

Member
hey... i happen to be scrolling and saw your thread and replied, din realised i was really 'fast'! ha!

anyways, to PM (i.e. private message), you juz need to click on my name and a menu with my info will come up, and you can click on send PM. you need to enable this in your own profile if you want to allow others to PM you.

3D scan does not eliminate genetic disorder, only an amnio test can. you might want to chk with your gynea on this.

as my ger has other med conditions, we have always been in C class, and this has helped in a lot of savings. for a simple cleft op, you only need to stay abt 3-4 days, and total bill will not exceed $2K usually, including the op, so all claimable thru medisave. (medisave claim is $450 per day for ward charges, $2K for op, i think). as long as you opt for C class, and does not need ICU, the costs are actually quite low. the 2 contacts i gave you will be able to advise more.

but the cost will come later, as you will need to bring your child to speech therapy regularly, to improve feeding and speech. and you need to buy some things to improve your child's cleft before and after the op.

you can email me at rynare@singnet.com too.
 

marcmummy1

Member
Hi Alex, my baby girl was born with a cleft lip and palette in Jan at KKH. Happy to share my ongoing experience!!! I must say the team at KKH was our lifeline. Pls email me at marcmummy@yahoo.com.sg if you would like to chat. It's important to get support emotionally and gather info at this stage of your pregnancy.... I know we were shattered when we found out and it helped to meet and talk to people with similar issues.
 

toonixx

New Member
hi Alex

I also have a son born with cleft, palette plus have a deformed ear and he is now 8 month plus and we have no regret bringing him to this world. Do email me if you need more information. my email is cherlyn_tang@yahoo.com.sg
 

toonixx

New Member
hi are,

Still remember me? replied your email after the birth of my son but did not hear any reply from you. Hope to keep in contact with you.

toonixx and wife
 

are

Member
hey toonix...

sorry, my pc crashed some time ago and i lost everything. pls email me again!
 

yayaneko

Active Member
Hi mummies

my little boy Jayden has cleft lip and palate as well. Just undergone lip operation. We need to exchange information regularly. Realised that having a forum is really good. For eg, how long from nasal stand to first lip op? what to expect after first op? Things to take note... etc.

There is a full page write up at CCRC- KKH on 19 Aug, a forum has been set up by one of the parents - www.cleftsupportonline.com. But forum is not exactly ready yet.

So mummies, let's exchange information as much as we know to help one another.
 

yayaneko

Active Member
Hi Marc, agree that we were also very shattered when we heard the news. very upset but now looking at little bb jay, we are very happy to have him and also very glad to know that he is getting better.

It will be good if we could meet up together with other mummies and babies.
 

velle_sukalmi

New Member
Hi there, my son was born in August 2007 with cleft palate.. He underwent palate repair surgery and tube insertion to both ears when he was 6 month. Im not sure how's his speech gonna be. But so far, He is "talking" pretty well..Hope things will work out well..
 

maesiew

New Member
my gal oso have cleft palate. had her surgery done and now just the routine check up at KKH till 17 years old.

Now afraid that she might felt inferior cuz she has defects? Then afraid to have 2nd one, wait same.......
 
Hi there, I have just given birth to a son with cleft palate, hv gone to the first check up in KKH,can mummies advise how much is the operation fee and how long does the baby have to stay in hospital? any idea wat is used to patch up the palate?
Sorry for having so many qns, would appreciate your kind answers. Thanks.
 

limkoh_p

New Member
hi blurgal,

My baby has cleft palate too. She just had her palate surgery 2 weeks ago.

Thank u to Mae Siew for her time to share lotsa information with me, We went through the op smoothly. Everything is fine now we are just waiting for my bb's palate stitches to dissolve before she go back to full feeding etc.

my actual bill not here yet i suppose its same as the estimated bill, the estimated bill was $1900 for 3day stay in B2 ward.no initial payment required all deduct through medisave. if u choose c ward wld bill wld be lower.

My bb did her op on a Tue, admit to hospital on Monday, Discharge on Wed evening.

We were told something will be injected into the palate to soften the muscle, then they will pull the muscles to close the palate. Of course there are different kind of cleft palate, so better to ask ur doc the next visit. they will give u the details. for my baby has posterior cleft palate, the above was wat was done.

Feel free to ask me any Q... now it's my turn to share as much info I know to others.
 

maesiew

New Member
limkoh_P, you are welcome. Glad to know that your darling is doing fine! I think both our gals have the same palate..

Your bill is cheap. I was in B1 ward cuz the admin officer says that B1 and abv would be done by Dr Yeow and realised I had been fooled! And my total bill was over $6K (Cash $2.5K remaining by Medisave). Wonder if I could appeal? (op was in Jan 09)

And, I would like to know more about the followups appt with KKH until 17 years old. Can share experience on older BBs of cleft palate? I am quite worried about speech....

Do you have to bring BB for ENT (ears) followup too?

On July 14, bringing my girl to KKH for Spepch theraphy,ENT and Dr Yeow.
 

shirlyn_chew

New Member
Hi all,

I am 22 weeks pregnant and just went for my detailed scan yesterday and was told that my baby girl had cleft lip and possibly palatte too. During the scan yesterday my baby had her hand covered in front of her mouth thus they cannot confirmed whether my baby had cleft palatte or not. I was very sad and worried after hearing this. This is my 2nd child and my 1st child is a normal 32 months old now. I have never expect this to happen to us.

How do you all cope with your child now? I do not know what to expect after giving birth. Hope all of you here can share with me your experience. Thanks.
 

lovestork

Member
i found out my soon-to-be born precious son will have a clft lip... the cleft is a few mm, but the pallette seems bit more deformed...
been reading chicken soup for the soul and getting hubby involved and mentally prepared cos he will be the first one of the 2 of us to see him..
it's just facial deformity and lots of speech therapy that the child will go through right? any other implications that other parents experienced?
 

yayaneko

Active Member
Lovestork
After the first 2 op on lip n palate, life's much easier. In my opinion, the tough one is the first 5 mths. Why? Hv to bring bb for review at orthodontist every week. My bb's cleft palate is quite wide, on the right side. So he 'll need the mouth plate while feeding. But after the first op is done. It's quite a breather.

I used to think tt my 1st bb who is cleft is the one tt is difficult to tc of. But now tt I hv 2nd bb boy(now 5 mth) , who is healthy n no birth defects, kept on falling ill n had bronchitis.

So it is not abt bb with birth defects means difficult to tc. Normal bb also can get difficult. My first child with cleft now has no problems with speech, though he has regular speech therapy at Kkh. In fact, he speaks v well. After 1st yr, u will go less to the hospital.

Op fees are not the killer, as long as u r Singaporean. Regular check up at orthordontist is much higher in cost. But can pay using CDA card. For eg first visit, at Kkh, making the mould for bb palate , is abt $300. Subsequent visit is around $100 per visit. After 1st op, then Cost will reduce a lot.

Should go Kkh to speak to Josephine as Are suggested. They hv a specialized dept for cleft. V good n away Fr the curious eyes of others.

Actually after my son is born, I don mind to tell pple that he's a cleft. We brought him out a lot with him hvg a taped up upper lip where many pple gave strange look at him. We don care so much n love him a lot.

So lovestork, don be depressed. Pm me if u wanna meet up with me n my son. We 'll be at Kkh cleft dept on 1 dec at 445pm.
 

worriedme

New Member
Hi all, here young mummy who have just gave birth to first bb gal. She is healthy n good,just that born with cleft palate. Ever since I woke up from emergency c section, my heartaches n breaks ,tears keep flowing every night ,now n then when hubby break the news to me.can anyone advise how serious it is ,ongoing surgery how bb gg to suffer n procedure??
 

are

Member
hey worriedme...

there is nothing serious abt a cleft palate. it is totally repairable and there is a "standard procedure" and a capable team to help you and your gal through the processes. it is more important now for you to recover from your csec, then speak to either the team at kkh (from the link above) or the team at NUH, and they will guide you on how to take care of your gal, and what to expect.
 

yayaneko

Active Member
Hey Are
Hi hi.

Hi hi worriedme

Don't worry ya. More Siong is the first 5 mths like I've mentioned. But since ur gal is palate cleft n not lip. It's easier. But for a 1st time mummy I can understand how tough it is. My hubby n I cried a lot when we found out n we found strength from the boy never to despair. Though he has a mark on his lip, we view the mark as a mark of courage. Cos everytime we both thought it is so so difficult, (during his post first op on lips) , our little boy never failed to show us that his recovery is much faster than we thought.

I won't paint a picture of roses for you but I can say we are fortunate to b in Singapore cos there's a group of professional help , ranging from dental, orthodontist, speech therapist, plastic surgery, PD (specialist in cleft babies) n ear nose throat specialist all under 1 roof. They brief us on wat we need to do. We will also go back for the annual Xmas event. Some mummies whom we met at Kkh also become frens.

I will say that you are gonna b a strong mummy n will be much loved by your daughter n supported by friends n relatives.

Hang in there n always remember - hvg your girl is the best thing on earth. Don't forget on celebrating your new parenthood n ur little precious bundle of joy. Ur little one will nvr want her mummy to feel sad because of who she is. Be strong- msg me if you need a listening ear or more info. U can refer back to my previous posts on cost. Just pm me anytime. Cheers.
 

worriedme

New Member
Hi Are & Cath,
Thanks alot for E positive advise n encouragement. Yes, my daughter need me to b strong just tt at times feeling sad n can't help to control my tears. Yes I have went to KHH after I was discharged. Those KHH teams were friendly & helpful and I have even met dr yeow ,though he was very positive about it n assurance it is fine ,minor ....but u guys know wells how 1st time mum to b feels. And also why it was not detected while pregnancy. Anyway , I willl remind of what u have Guys said !thanks alot!!!!
For my little precious , I gonna be happy n strong ya!
 

are

Member
hey... how are you & kiddos doing?

hey worriedme... glad u already had the assurance from the team. it is definitely normal for you and hubby to feel sad, and it not pointless to think now why it was not detected. juz do wat u need to keep your gal happy, cos she's gonna be the love of your life. : )
 

are

Member
hey worriedme... yes, we are doing great, despite my ger's condition (she's a chromosome disorder with other medical probs). celebrating my ger's 7th birthday next mth with a party at bishan home. i've also started my own charity project 3 years ago to pay forward the kindness i've received from many people esp the staff from kkh throughout the years. cath joined one of my projects too. : ) u can visit www.facebook.com/projgive when u have time. hope its gives you encouragement.

cath... new project in oct... join us??
 

vivlawsy

New Member
Hi Mummies

My boy has bilateral cleft lips and palate. He is now 6 weeks and we have been following up with the CCRC team in KKH. About 3 weeks ago, my boy started wearing a Nam and my nightmare started. He feels so uncomfortable that he keeps trying to push the nam from his mouth. He also sleeps very little and cries alot due to wearing the nam. I was told that I am supposed to remove it for cleaning after every feed and put on again. I like to ask what's your experience with the nam. The orthodontist was saying some kids actually likes wearing the nam. But it's not the case with my boy. My heart breaks each time he struggles when I put the nam in his mouth.
 

anewmummy

Member
Hi worrisome,

I couldn't PM you. Would you mind to PM me?
I have similar situation as you and would like to get some supports.

Thanks.
 

lovestork

Member
Always remember that we are trying to get our child to get accustomed to something that is NOT normal to them... their normal being is the state they were born in... it takes a lot of patience. My son has no problems with the NAM, altho he seems to have trouble breathing after every surgery for awhile and scared us each time. be the best support you can be to your child, keep your emotions in check... You will be very tired, it is not easy but don't let it take the best out of u. Good luck! p/s: all will be well
 

worriedme

New Member
Hi all! Hope all mummies n babies are doing great! Really thanks alot for all the support which I have not forgotten. Finally I can easily breathe and free time more.My gal have done the surgery ! N see how times really files tt fast.
Guess if not u guys have given me those support back half yr ago, I really think tt I will not b that strong to go through it!
I hope I can be like u mummies to adivse n encourage someone else there one day too..
 

kathleensmiley

New Member
Hi. I am giving birth by end April and my son has a cleft lip and palate. We are preparing for the cost of the operation so can i know how much is the est cost of the operation and hos much is covered via medisave?
 

worriedme

New Member
Hi Kathleen,
So far I have not received the final bill. I took B1 for my gal cleft palate. I have pay upfront deposit of 2.2k before admission.. No payment to be made when discharge, still
Waiting for the bills.for the cleft lip , am unsure about it.. But u can always call up KK admission dept to check for the charges. Very funny thing is that, admission dept always tell u so if doc will b dr.vincent yeow ,it will be under private which u need to take A1 or B1 but my understanding from
Others is not the case.
Hope it helps;)
 

anewmummy

Member
Hi worrisome,

May I know how is your kid condition? How old is the kid now? How did you prepare the baby for the operation?

My kid has posterior clef palate. We are given the Pigeon
Bottle. My worried is the ear. How tonprotectthe ear from fluid going in as baby only one month old. It seems operation only able to do when baby 6 months old? Do we have weight target to reach? So worried.
 

worriedme

New Member
Hi new mummy! I feel u.. But trust me don worry.. Eerything gonna b fine. My gal 7 months plus n done the surgery not long ago. As far am concern about the fluid flow to e ear.. My family n I will tried out best for every feeding , the milk , water doesn't come out from the nose then I guess so it don flows to the ear too.. so far my bb hearing have no issue..
Frank enough, I wasn't much well prepared for my gal to go through the surgery..But u gonna b strong.. I have went through it n it's fact tt babies know our emotion.. Since u are using the bottle teats too from KK, The nurses will guide u .. And if possible ask for smaller hole for the teats, so babies learn the suction way after surgery too. I think i not wrong the speech too... But do not force the babies too coz of consuming of milk too long, it's wrong too.. So take it slowly!
 

overwhelmed_dad

New Member
Hi,

As a bit of background, very recently we did our 20 wk scan and the results came out that our baby was diagnosed with a bilateral cleft and possible cleft palate. As you can imagine the news hit both of us quite hard but after doing some research on the net it seems like its not the end of the world as there seems to be surgeries/help for the baby on birth. However our concern was the other syndrome/ genetic defects that (God forbid) that maybe be also present. Can i ask the more experienced here if there are any tests / disagnosis we can do to find out more about these defects?

Post our 12 week scan we have declined the Amnio due to the risk of miscarriage that it carries but we are now reconsidering it. Although our main concern is that amnio only tests for chromosone abnormalities and not genetic disorders?

Apologies for such generic questions but this has been quite sudden and has left me with little time to react and a bit lost as to what is the next step from here!. Thanks in advance for anyone that takes the time out to read this
 

lovestork

Member
During the scan that detected the clefts, they would have looked for other signs that signalled down syndrome.
Cleft lip/palette were also commonly thought to be hereditary ie. genetic disorder but like most parents out there, my son is the first in both my husband's and my family to have bilateral cleft lip/palette. A fluke, maybe.
I am sure u can ask the gynae at ur next visit, but for me, if i have determined to keep the baby, i leave all in the hands of God. And hopefully, ur baby will be fine. I send my prayers and well wishes to you and ur wife, ahead of the birth of ur child.
Parenthood is a blessing.
 

overwhelmed_dad

New Member
Hi Kookyash

thanks for the comforting words. Its also our first son and its also the first within the family to have cleft lip/palate.

Our gynae also recommended amnio but i think the decision we are coming to is that its impossible to test for all the genetic defects / chromosomal abnormalities so we might just leave it in the hands of fate. My wife is quite determined to have the baby regardless so i guess the decision is made a bit easier because of that!
 

overwhelmed_dad

New Member
Hi guys again

On the subject of cost, can i get some help please? I have seen that most post seems to indicate its not that expensive an operation ranging from 2k to 6k. However when i spoke to KKH they have quoted me something vastly different.

The indicative cost has been
* 3k for the NAM
*13k - 15k for the cleft lips operate at 3mnths
* 13k - 15k for the palate operate at 10-12mnts

And the above cost doesnt seem to include the weekly visits nor the orthodonist. It sounds so much more than what i have read in the forums. Can someone pls help?

Thanks in advance
 

yayaneko

Active Member
Hi hi overwhelmed.

Are you a PR or foreigner? Is bb a Singaporean? If he is then ops fees are usually paid by medisave. You seldom hv to pay. Perhaps a hundred or two. And yes the first op on lip is around 3 mths while the next op on palate is ard 9-11 months. 13k is likely to be before medi.

NAM and orthodontist fees are the rather hefty fees. It's a weekly visit for the first 3 months and every visit is outpatient fees of around $120-$300. $300 if u need to change the mould. Otherwise it's typically ranging ard the mid hundreds.

After the first 2 major ops, there are the ENT and possibly speech therapist to go for. They are subsidized rates at around $50 per session. Your visits to ENT is more frequent during your first year but after which visits to Kkh is a lot lesser. Perhaps speech therapist after age of 2.5-3/ 4 and 3-6 months each time.

The costs was initially wat we worried too. But rest assured, as long as baby is Singaporean, you are pretty ok. My friend whom both parents are PR, baby also PR, they paid 9k for the first op. not sure about second.

After you are decided on keeping baby, first thing to do is to hug each other as you need each other as moral support. Both decisions must be firmed. Then embrace having your first child coming to this world!!!! It's a great joy. They are just like other babies but just that they needed a bit more attention than others. At least I'm v glad there is a strong support group at CCRC.

You and ur wife must feel happy, so baby will feel ur happiness. Our family has no history too. But I guess baby is the best thing to happen to us. Actually it helps to build an even stronger relationship bêtw me and hubby. Cos many people will say its the wife lo, u know can't do this or that and the wife this and that- all superstitious stuff. But my hubby will stand firm, squeeze my hands and said ignore them.

We carried our baby out to Ikea, there are shoppers who told us to remove the nam tape, say baby is not breathing cos of that, we just smile and said proudly, oh yes our baby is a cleft so this is the right treatment. We are not shy to tell people that our boy is strong boy so are we - strong parents.

ESP parents in law are the toughest to handle. They may say things that may inevitably be hurtful though they don't mean it at all. So u hv to be pillar of strength for each other.

Like before op, there needs to be taping every day and someone needs to do that. So it's always me or my hubby. One person be the bad guy.

You will feel tired. Take a deep breath and tell urself u can do this.

As baby can't suckle in breast feeding, get a good breast pump. This forum has people who buy from US at a whole lot cheaper. Keeps a steady milk flow as mummy breast milk is very good for baby's post op recovery. Just pump n pump. I actually have more milk pumping for my cleft baby than my 2nd breastfed baby who don't hv cleft. So trust in urself and do all that is necessary. Sift out the unnecessary words from others.

Oh and, there are a few more ops along 9yo and if his ears needs to insert a mini tube. But we will worry about it as we go along.

You are not alone. Let us know if u need any advice or listening ear.

As for the amniotic test, can't advise u on that. I din go for it but my friend went. It's like a piece of mind. She's ok.

If u want to whatsapp me, pm me. We can share more. My cleft baby is 4 yrs old now.
 

overwhelmed_dad

New Member
Hi Cath

Thanks so much for the detailed reply. We have decided against the amnio test haha altho it was at the operation itself with the gynae standing there needle in hand. We both suddenly felt it was wrong and declined last minute!

We have read alot about what is involved and are getting more and more prepared for it. Both our parents have been quite supportive so its not a that definitely helps out alot.

Unfortunately we are not PR nor singaporeans so that could explain the cost of the fee. I have asked a couple of places and the pricing seems similar so at least im not being ripped off!

It would be great if we can have a chat so i can get a more personalised feel for what to expect. And sorry i don't know how to PM you
 

yayaneko

Active Member
Hi overwhelmed.

I see. Great to hv ur both parents very supportive. My in laws then, inevitably, made some comments that shaken my hubby's decision in keeping baby, which made it quite tough for me then. Luckily that was just a day of waver.

Yes we dare not to go for Ammnio test. It seems like the stakes are too high.

Yup the cost is pretty there if u are not locals nor PR. But the support is still as strong. Like Jo or other nurses will visit u in the hospital that ur wife is delivering and explain how to bottle feed baby. How to burp baby? And what to expect for the next 1 week till you come by to CCRC.
 

overwhelmed_dad

New Member
Yeah it definitely feels good to have parents supporting. Makes things alot easier even tho at the end of the day its you and your partner's decision.

Yeah from my research and speaking to other places, it seems like the pricing is around there.

I am still tossing up where to go. I have heard good things about KKH and have no concerns on Dr Vincent Yeow's skills. My concern is the orthodontist area where i would have liked to use Dr Catherine Lee from Camden medical. Seems like such a hard task to choose which treatment centre to use and once again as you said the stakes are so high!
 

kathleensmiley

New Member
Hi all, my son just finished his cleft lip surgery. It is such a relief that the first step is over. I had lots of help from this group so in case anyone has any questions - pls
PM me and will be glad to help out.
 

sunnyicy

New Member
Just want to thanks Cath for all the info she has provided. My son is now 15mths and life is back to normal. To all mummy and daddy it is indeed a very very difficult and tiring ordeal till the 2nd Ops but it is all worth it once you see your kid back to normal
 

yayaneko

Active Member
Hi hi William
U r most welcome. I must say that no matter how tough it is to go thru with our kids, we gotten the strength from our little babies to see them recover so fast n we are able to walk thru w them.
 

rissa

New Member
my baby girl has a clef palate (soft) and is going for op in march 2013. can anyone advise if there is anything i should do for pre and post op. Also, lately, i heard there was a few cases in KKH, babies went for minor surgery but pass away, dr can only said it was due to bacteria infection. i am quite worried now. i read the post and realised most of the clef babies op is in KKH and also researched that KKH has the best team. Wish to hear your opnions and experiences here. thanks so much.
 

rissa

New Member
Also, anyone has experience with Dr Por Yong Chen? He will be the one doing the op for my little one.
 

anewmummy

Member
My girl posterior cleft palate hard and soft operated this September and everything goes well under Dr Vincent at KKH. Thanks everyone! Now I see behind still looks has some stiches internally behind the palate "meat" ... Probably normal. She is still fed with cup.. Should I change to bottle?

Rissa
I didn't hear such news and KKH is the best. Not to worry. Opt for B2 or B1 class to save money.
 

lovestork

Member
Hi Rissa,
My son had bilateral cleft lip and palette. I gave him Omega 3 + DHA (i got Nordic Naturals Baby DHA) as soon as he was born and to prepare for the many surgeries.
The Omega 3 will boost the immune system, and promotes brain, eye and nervous system development, as well as supports learning and language abilities.
The team at KKH is just awesome, and they are truly top notch, under the eye of Dr Yeow.
Have faith in them, and that God is watching over them as well as ur child.
Faith and hope is the biggest thing that overcomes fear
 

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