Cleft Lip/Palette baby

rissa

New Member
thanks for the quick reply.

Hi Kookyash, i thought they can only take supplements 6 mths and above? she was on 80% breastfed but i have just weaned off. thinking of giving her coconut oil as it helps to support immune system.
 

rissa

New Member
my girl will be op by dr por as dr yeow will b gg on mission trip so he wont b around
Dr Por should be as good right ?
 

lovestork

Member
The Baby DHA goes by the weight of baby - 5lb (about 2kg = 1ml)
My boy couldnt breastfeed hence the urgency to put him on supplements

Have faith k
All the best!
 

rissa

New Member
thanks Kookyash.

Btw, your son is op by dr yeow and is it under the sudsidy rate ? i just called KKH and request to change for dr yeow they told me, they will have to charge me private rate. is that true?
 

anewmummy

Member
Well if you specifically name the surgeon, then yes you have to go for private. According to them, the B or below can not choose surgeon.
 

rissa

New Member
sigh guess so. hope there will be some feedback on Dr Por soon. We spoke to the nurses and were told that both Dr Yeow and Dr Por are equally good. btw, can we chat more via email instead? tyo_f@hotmail.com
 

anmama

New Member
Hi, I'm a new mum and my baby boy has cleft lip and palate. Ever since I gave birth, I felt like shutting myself away from the world, but my husband encouraged me to speak to other parents with similar experiences so I thought I would start here.

Could you please tell me where and when do support groups for parents with cleft babies meet up?

Also, what are the criteria that baby must meet before he can have his 1st and 2nd op at KKH?

Thank you!
 

lovestork

Member
Hi rosa,
I suppose you did not give birth at KK otherwise you wld have been briefed and given an indication on the various stages and milestones.
Give the kkh CLAPAS team a call. They r patient and truly the best. They will tell you wat the expectations are.
Again, as long as we give our children our best, they will be well taken care of
 

are

Member
hey rosa...

yes, do approach the team @ KKH who will guide you thru the process and also link u up with the support group. i've already "graduated" tho my ger's palate is not healed due to her other medical probs.

and it is not your fault that you are feeling this way. all of us felt this way too. just have to keep reminding and encouraging yourself that your child needs you to do what you can for him.

chin up! the sun is shining but you gotta look up to see it!! :p
 

anmama

New Member
Thank you kookyash and are! My baby also has a few things he need additional check up on. Been a tough and long journey which we anticipate will last some time due to many unknowns.

Just have another question. My bb just failed his hearing test again after almost 3mths. Ent dr says its likely that he has fluid in his ear which is blocking his hearing and suggest we implant a tube in his ear ASAP so that he can hear and minimise impact on speech in the future. I remember the cleft nurse explained that te tube is generally inserted during either the 1st or 2nd cleft op (i cant rember which). 1st cleft op usually takes place from 3-4mths. But the Ent dr said usually the cleft op can b done whenever bb is ready n not necessarily 3-4mths. But my bb is still slightly under the required weight by dr Yeow, we are not sure exactly when he will be able to have the 1st op done. So ent dr urged us to schedule the procedure in in 3d's time. Is it true that the tube insertion in the ear should be done ASAP? I'm just concerned that he will hav to go under GA for the tube separately now and not sure whether there are any adverse effects or whether bb really need to go through this separately.

Thank you!!
 

lovestork

Member
Hi dear,
Understand your many worries, reluctance, doubts and anxiety.
The hearing procedure is a short, simple albeit an important one. My boy went through it twice, and it is remarkable seeing him react when his hearing is clear! I had some parents go through it 4 times, so u r nvr alone. Actually even non cleft babies have hearing abnormalities too, from what o observed.
Weight and nutrition of ur child is impt for any type of surgery. Of course, the younger the better, but we want a positive outcome thru&thru right?
Have faith, take it easy. We are here.
 

are

Member
hey anmama...

my ger has never passed her hearing tests in 8 years, but will turn around in seconds when she hears her toys.


and for grommets, you must have heard about my ger. 6 pairs in 8 years! almost one every 6mths when she was younger, but the last one was about 2 years ago, so we are keeping fingers and toes crossed!!

and grommets are easy to insert. very short op only, cept for my ger cos she is a cardio patient, so need to stay overnight. but they are very good. she hears a lot better, and keeps her hearing. cos if don't do grommets, may burst the ear drums and that will affect the hearing, so don't worry, just get it done.

in fact, no doc will ask you to do something not necessary. the operating theatres are always full, they are more than happy to not list you!
hehehe...
 

hypervenus

New Member
hi, i'm born with a cleft palate and i'm already 23 this year. I chance upon this forumboard as i was looking for information about after treatment when the kid with cleft palate grows up. I can't remember if i gone for any other treatment aside than speech therapy till i was pri 3 and later on consulted the ENT again when i was pri 4 till i was lower secondary and was discharged after a few round of ear draining. Up till now i haven't gone for any further checkup on cleft palate until i arrange for a dental appointment at NDC and was refer to a cleft specialist (dental) for my oral care. That was when I realize that I actually born with a cleft palate… all the while my parent have never mention to me that I have a cleft palate aside than telling me I’m bone with a hole of my throat which barely explain anything. Occasionally, even now, food that I eat gets stuck in my nose which blocks the airway or having water coming out of my nose while drinking water. But still my parent didn’t tell me anything about it.

I find it depressing to find out about having a cleft palate only at this age of 23. A little slow on that thus I begin to do my research on cleft palate which I realize, sinus is very common in people with cleft palate.. I’m having sinus myself for 24/365. It terrible and no amount of medication helps to reduce to flu. Not only that, I have ear block all the time and my hearing is really bad to the extend even when the person is speaking to right in my face I couldn’t hear a single words, normally I will look at the person mouth to figure out what the person is saying. Note: I do wear hearing aid when I was younger but not anymore now. At the same time I’m suffering distichiasis, a rare disorder in the eye which require lots of treatment and operation done. (which can be read up here: http://emedicine.medscape.com/article/1212908-overview).

My medical bills are weighting me down and I didn’t dare to approach any hospital for further check-up on my cleft palate. Anyone out there with kids as old as I am and is still receiving treatment for their cleft palate?
 

lovestork

Member
i emphatise with you, and I am a parent of a 2-year old son who was born with bilateral cleft lip/palette and I worry abt his future - his self-esteem etc as his speech is affected.
He had his 2nd hearing surgery and it has been positive, so far. But on top of that, after reading up and talking to doctors and parents, the ears/hearing canal is highly sensitive and prone to damages. A hard sneeze could damage ur ear canal, let alone a birth defect.
I bring my son, whenever i can, to the chiropractor every 2 weeks, to aid him in his overall growth, and development, especially the cranial/neck.
But my 2nd biggest concern is his speech - i hope it will not be nasal sounding... i worry much... but at the same time, i am hopeful.
 

anmama

New Member
Thank you kookyash, are and hypervenus!

The tube placement procedure went well but his starting to have discharges. Dr says if the tube wasnt there all this fluid will remain in his middle ear so it's a good thing it's coming out but also shows how regularly my son has ear infection...

Hypervenus, that link is really helpful!! Learnt a lot from the PDFs. Although it does make me start thinking abt all the diff hurdles we might be coming up against.

I am also v hopeful he will fair well but at least i kno early intervention will be available to minimise adverse impact.

Will be seeing dr Yeow tomorrow. Hopefully will be able to plan for his 1st surgery soon!!
 

hypervenus

New Member
You are welcome Anmama and i'm sure your bb will be
all well again!


Even thou back in the 90s i didn't receive any treatment for my ear such as insert of tube and so on thus i do suffer from hard of hearing. I grew up having to rely on hearing aid to hear better and i even failed my primary 4 streaming listening even thou i was sitting right in front, near to the radio. But all are well for me right now, i don't use the hearing aid anymore. Ps. my hearing is still quite bad.

i'm sure your bb will grow up really healthy just like i am minus the hearing problem. =)

Cheers~
 

changni

Member
Dear mummies, I was also born with a cleft palate and unilateral cleft lip. Am 32 this year. Just wanted to lend my support to all of you here. Applaud your courage and strength because it's not easy taking care of a cleft baby going through all the surgeries and all. Im a mummy too with a 19-month boy.

Chanced upon this thread and felt the urge to share some words of encouragement having been thru these as a patient myself. Met some parents of children with cleft and they shared their concerns about how they worry about their kids being put down in society. I just want to share that other than a scar on the face, your child is just as normal as anyone. I used to be very pessimistic over the years but I have grown to realise that being positive is the best thing to help yourself and others. Something to share if it helps reassure you - I sing for events having won a national competition sometime back, and it's something that I'd never dreamt about before.

Hope to inspire some of the parents who are feeling lost and worrying for their child. Drop me a PM if you would like to chat or hear my experiences as a cleft patient.
 

rissa

New Member
Hi mummies, my girl had her palate repair 20days ago. Would like to know when can give full strength milk and when can stop flushing her palate ? Thanks.
 

anewmummy

Member
hi mummies
my girl went through operation for posterior cleft palate@ 6 months old, now she is 12 months old. the tubes are not ejected yet (still in the ears)...

i wonder when can I start her on swimming? will it cause any side effects as the tubes are there? if the tubes ejected, can she learn swimming then? thanks!!
 

anewmummy

Member
To Julin,

I feel so sorry to hear that. I couldn't advice anything but I wonder if is it still possible to seal the hole with surgery at this grown up age?
 

sherreen

Member
Rissa,

I would advise you to call up CCRC for advise. I didn't put my gal on full strength that fast...increase the strength slowly. I did the flushing till 4 weeks...till the stitches no longer seeen
 

sherreen

Member
anewmummy,

We were advise by ENT not to let our gal swim with the grommets is there...but even without the grommets also no swimming. But, you can still let your gal enjoy playing with water as long as the head no inside the water and make sure water don't go inside her ears
 

rissa

New Member
Hi Sherren, thank you for your advise. She is now 5 wks from her surgery, and doctor say she can go back to bottle feed. but I try with normal bottle, she still not able to drink? Is it ok ? mayb it is still painful. also, she still has some stitches.
 

kj_mummy

New Member
Hi all

I just gave birth to a lovely son on 2nd April. He was born with bilateral clefts with complete platete involvement. Our Pd referred his case to Dr Yeow and we see him as soon as we discharged from the hospital on friday.

I like to find out from you experienced mummies on the critical milestones expected to be reached for my little one before he turns one:

•Nasoalveolor Moulding (NAM)at 1 month old?
•Lip surgery performed at 3 months old?
•Palatal closure performed at 6 months old?

The timeline is important to me as I am considering quitting my current job so I can take care of him especially post op. Thanks
 

lovestork

Member
Congratulations on the birth of ur son. It is a blessing! My son, born with bilateral cleft lip and palette is now 2yrs. The extent of surgeries and post- op care is pertinent. I left my job before he was born so that I psyche myself up mentally and learn more. And indeed upon his birth, I remember nt being able to pamper my myself w post natal massages cos all I want to do is to be able to feed him, and do it well and care for him. Pre-surgery required a lot of work, taping of the lips together, gg for orthodontist checks.. bt rest assured all will be settled and ok after the palette surgery, that is between 6mths - 1 yr of age. I got a great helper when he was 6mths on and resumed work. But the surgeries and check ups r planned in advance so I could block my leave prior. Personally, the teething phase is esp painful for mine and he develops high fever. Not surprising since the gums are awry and teeth grows out in a disarray. The next scary part for me is the orthodontist check when he is 7 or 8, for gum and teeth implants. But we wil cross the bridge wen we get there. To summarise, great if u could stay home and b part of the process but in any case, all will be well. Hope I was of help/ relief.
 

kj_mummy

New Member
Thanks for the quick and informative response. When did your dear son had his platete surgery?

What is the cash outlay you paid after the lip and palatete surgery net of medisave deduction? My son is considered a private patient at KKH since we are referred from private hospital.
 

lovestork

Member
I can't advice on the payment as I was a private patient at kkh and advised to downgrade so that we could enjoy subsidised rates.
Ask the hospital how to turn yours to subsidised. Must be a wsy esp if u r local.
sorry can't be of much help.
 

rissa

New Member
Hi J&K, my girl had her palate surgery at 8 mths, which was in early march. I delivered her in Thomson and was also referred by my PD. Prior to my appointment with KKH, we went to poly clinic and get the referral letter. But you do not need the poly clinic to fix the appointment for u as you already have an appointment with KKH. You can submit to them the referral letter on your first visit and it will be sudsided rate. You can also contact CCRC hotline, they are very helpful and able to provide useful information. It's been 5wks now after her opt, we still have not receive the finalized bill from KKH. Based on the estimated bill advised by them, medisave deduction is approx. 3900. This is based on class b2. if you opt for class C, will be much lesser deduction from medisave. Sorry cant advice for lip repair but should b similar charges.
 

tiffyshyan

New Member
Hi all... Went thru detailed scan last mth at 20th weeks pregnancy n bb is found to have a cleft lip of 2.2mm gap and cleft palate of 4.4mm gap.. Though me and husband are getting mentally prepared since the moment we know our 2nd child is gonna be cleft lip & palate we are still pretty clueless about how things will develop, what can/shall we do at this point of time. Our elder child is a healthy, talkative, beautiful 4 yrs old boy.. Me & hubby worry our number 2 will get affected emotionally n psychologically as he grows if insensitive people starts comparing the 2 brothers.. Appreciate all advises..
 

changni

Member
I think it's fine. My bro is normal too while i have a cleft - no one has made any such comparisons so far

i think as long as their bond is strong, nothing much to worry about. what matters is to have the kids know how much daddy and mummy love them.
 

kj_mummy

New Member
Hi Rissa

Thanks. Did consider gg to polylicnic first after we discharged on Friday morning and before our appt with dr yeow on the same day. But hubby and pd is against the idea as we may or may not assigned Dr Yeow. Since our pd highly recommended him.
 

kj_mummy

New Member
Hi tiffy

In similar situation as you. Our 2 year old son also born healthy though premature. No 2 born with bilateral cleft but grandparents, mummy and daddy love him as much as our first born. Family bonding is more important and should not show favoritism Shouldn't worry too much just get yourself prepared for the curious stares from strangers. Just the other day we were at the hospital cafeteria and this auntie came to our table and tip toed to peep over my husband shoulder as he held our son close to his chest. Some ppl just lack of subtlety.

I heard you can get prenatal counseling at kkh about your child condition before he is born but I'm not sure you can check with the centre. Maybe you can get yourself check in as subsidised patient first. I didn't do that because we found out his cleft only during 36 week gestation and we already scheduled for c section at 38 week gestation while we still coming to terms with it.
 

sherreen

Member
Rissa,

My gal was born with soft cleft palate and did her surgery when she was 7 months old. After 5 weeks, Dr. Yeow said she can be bottle feed...I tried initially, she refuse the bottle feed. I thought she is used to fast flow, so I cut the teats, still she refuse it. But I never give up...I keep trying...change to another new teat ( Avent teat no.4)...suddenly she just takes it. But nurses at CCRC told me that I am lucky that she takes from bottles..some kids just don't and they transition to sippy cups. It's all your luck..
 

tiffyshyan

New Member
Thank you J&k.. Me n hubby will certainly go for d counseling to get ourselves more prepare.

BeFabulouslyPositive.. Thank you..yes our 2nd boy will definitely receive alot of love not just from me n hubby.. But also from him kor kor and the rest of the family..
 

clam

Member
Just want to share, my son is now 7 years old and was born with a cleft palate. He underwent cleft repair surgery when he was 7 months old , the roof of his mouth was basically reconstructed from what I saw. It was a traumatic time for us to see him in tubes and bleeding from the mouth after the surgery but thanks to the support at KKH cleft centre, he recovered very fast and was discharged after 2 nights stay. We opted for A1 class (non subsidised) because both parents and grandma wanted to bunk in overnight with my son. It was a Saturday op and after staying the first night, my son was smiling again despite the stitches and we figured that his doctors were off duty on Sunday so no point staying longer. The nurse put in ice water after his surgery to stop the bleeding and it helped.

The bill was around $6k, around half of which was paid via Medisave. This is considered a congenital disorder so my insurance would not pay even though I bought health and medical insurance for baby before he was born. My son's surgery included inserting tubes into his ear for drainage to prevent ear infections which cleft children tend to be prone to. My son's surgeons were Dr Foo Chee Liam (cleft) and Dr Lynne Lim (ENT, now head of ENT NUH)

As my son could not feed on the breast, I had been expressing breast milk for him since birth. He did suckle now and then just for comfort but not actual feeding because he tends to choke when there is a let down and the milk comes out fast. It is important that baby is fed breast milk after surgery, as far as possible since breast milk does not form clumps or co-agulate like powder milk ,that will get stuck in the stitches making it hard to clean the wound in the mouth after surgery.

We had to buy elbow guards for our son to wear so that his arms and hands do not hit or touch his mouth during the weeks following the surgery. The neighbours thought I had beaten my child up and he has broken arms, whenever I brought him out for a walk! That was quite funny.

We went for annual speech tests in KKH and I am relieved that not only did my son started speaking early (thanks to baby signing time) at 11 months, but he was ahead of this class in speech throughout his preschool and now primary one. So not to worry, some kids may not need prolong speech therapy.

The miraculous thing is my son was born without a uvula but after the surgery, he grew one! Really I have much to thank God for. I was worried sick when my son was born and I was informed of his disorder but despite the initial weeks of feeding problem (starting with feeding milk with a spoon, then to the Medela soft feeder to a bottle where you have to squeeze to help the milk flow sold by KKH, to a normal bottle, to delaying solid food feeds) and the need to keep him upright after a feed which was very tough when you are expressing milk at the same time (no rest periods), we have come a long way..but looking back, it has made my boy more resilient and given him a strong fighting spirit.

sorry for the long sharing..but I really salute all parents who support, love and stand by their kids born and living with a cleft condition, through the years of tender loving care.
 

sherreen

Member
I just bring my gal to see ENT Dr. Prof Henry Tan at KKH yesterday and her hearing test fail again. She had her grommets insertion in feb this year and was inform by doc that since her test fail, the grommets came out. Very frustrated to hear that...and doc keep on insisting that she cant hear when actually my gal can response when we call her. Anyone had same experiences? My gal speech very good...can pronounce very well..if she can't hear..she definitely can't speak properly.

I am thinking of seeking a 2nd opinion at NUH ENT doc..
 

lovestork

Member
The ENT doctors and staff really needs to learn to be more clear.
My son also could respond to us too, but maybe a lil delayed. Instead of saying cannot hear (=deaf), they can instead say poor hearing or hearing is not optimal, right? The last time i went, 2 nurses were chatting over my son while the doctor was checking his ears and removing his ear wax. I told them off immediately.
2nd opinion will help ease your woes.
 

rissa

New Member
Hi Sherreen, I am also thinking of 2nd opinion but have not consider where to go. My girl was seen by dr henry tan before I think he is not bad but all the other doctors not so good and the nurses are also not as good. My girl also had her grommet now waiting for the next appointment for hearing test in early jul. pls let me know ur feedback if u really go n seek 2nd opinion. Thanks.
 

sherreen

Member
Sunshine,

I have already made appointment to see Prof Lyanne Lim at NUH after reading clam's post. Would like to see what she said. My gal very small still..less than 2 years old...now she's on antibiotic to clear the ear infection since her hearing test fail. Antibiotic causes her to have severe diarrhea. According to Dr. Henry Tan, if the antibiotic doesn't clear the infection, he would suggest another gromments insertion. He also suggested a detail hearing test...but before that I want to know what the NUH doc said.
 

anewmummy

Member
Hi, my girl now is 14 months and she passed 4/5 hearing test when she was tested 4 months ago. Last check up shows one of the tube is gone and left anther one in the ear. Next check up will be 2 more months.

We notice she only can pronounce ma-ma. Anything else he can't thought she seems trying. Does that mean she has speech problems?

Thanks.
 

sherreen

Member
anewmummy,

Based of the guide given by my gal speech therapist, 1 year old may say "mama" and laugh a lot. She will start to recognise own name and understand no. Also waves goodbye and show affection to parents. So I guess she's allright...don't worry so much. Has she see the speech therapist yet? They usually arrange one at 1 year old and next will be 18 months. Speech therapist will guide you and assess on her speech and growth development.
 

rissa

New Member
Hi Sherreen, keep me posted after ur consultation with nuh. Btw, my girl has been getting running nose very easily and often after her palate surgery. Anyone has similar experience here? Is there anything she can take to build her immunity? Seen pd a few times and was on anti biotics for 2 wks still doesn't help. Bcos of her running nose, she get ear infection.
 

anewmummy

Member
Mummies

I recently just realized that my kid (posterior cleft
Palate) might / has the condition called Protruding Lower Jaw. I see her upper teeth much inside then lower teeth. Kid now already 15 months and she grows teeth late that's why I never notice. I thought before surgery she looks okay. Is it because after surgery, she doesn't need pacifier and instead she bite bolster cause this? Or they way I forced in the milk by pressing her lower lip against the milk cup dring post-op recovery period causing this? I am blaming myself.

So now, what should we do? The next review appointment with Dr Vincet is September which is really late.

How to fix it? Any mummy can share experience?

Thanks!
 

are

Member
hey anewmummy...

my child doesnt have this, but i know a few "normal" frens who have this. 2 had surgeries in adulthood, 1 lived with it, tho he knows surgery is in line as the bite gets worse.

but this is a "deformity", not something you have caused. no way could you have done any damage to jaw, unless the jaw was broken or something, so don't blame yourself.

you may want to try calling the cleft centre and see if someone can answer your questions or email them?
 

lovestork

Member
The orthodontist and dr Vincent did mention this and they have to wait until all the baby teeth has grown out and fall off, before doing a gum implant or something like that to make sure the adult teeth grows out properly. Around age 7 or so? I know I am nt looking forward to it as it will sure hurt much
 


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