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cleft palate

23 replies

eefs · 10/12/2003 13:14

DS2 was born last week with a soft cleft palate. I was initally very upset and am still devastated that I cannot breastfeed, but after a worrying few days when he wouldn't feed at all I'm now just mostly relieved that we seem to have cracked that problem.
We are using a Haberman teat and I am feeding him mostly EBM, with an occasional top-up of formula.
Has anyone else gone through this and can you let me know how you coped with the constant expressing/feeding cycle? How do I keep up my supply when DS2 cannot even suckle at all? Do I have any chance of ever breastfeeding him when he's a few months older or should I just accept that it's not an option?
We've been told that DS2 will have an operation at about 10 months to close the palate - did this prove to be the final fix for anyone else or are there more problems that I should be aware of?
I still feel so sad for DS2 when I look at him as he's so perfect and innocent. poor little baby.

OP posts:
bundle · 10/12/2003 13:19

eefs, I'm sorry to hear you're having such a rough time after the birth of your son. I have no experience of this but whenever I've been in touch with CLAPA they've always been very helpful & supportive (I'm a health journalist). I also saw surgery on a baby to have the cleft closed & he was very chirpy straight afterwards, drinking his milk and his mum was delighted. the team at your hospital should really have put you in touch with a feeding specialist to help support you at this difficult time. lots of love, x

bobsmum · 10/12/2003 13:22

No experience of this personally, but a friend's dd had problems at birth and for one reason or another couldn't bf. My friend expressed for 3 months with an electric pump before her dd was switched to nutrenium (sp?) formula by her dietician. I'm sure there have been other mumsnetters who expressed long term, but their names escape me atm. Not much help I'm afraid.

All the best and congratulations again

Demented · 10/12/2003 14:19

Anais' DS was born with a cleft palate, she fed him for 10 months with ebm (hope she doesn't mind me mentioning, just I remember from previous threads and if she hasn't noticed this thread she may see her name in my post).

Sorry to hear about your DS2 Eefs. Can't help any I'm afraid but hope someone will post some advice soon.

Hulababy · 10/12/2003 14:25

Congratulations on the birth of your little boy.

I can't help with any of this at all but just wanted to let you know that my brother (now 29) was born with a cleft palate and hare lip. He has had various operations (not as advanced back then) and the final one to rebuild his lip area and mouth a few years ago. His scarring in VERY minimal and most people don't notice at all. His speech is good and he has done fantastically well for himself. It hasn't held him back at all.

survivour · 10/12/2003 15:03

Hi eefs, congratulations!!!!!!!!!!!!! my DS3 was born with a heart defect=TOFS and 7th nerve palsy, a facial stroke. He could not suck, so we feed him via NGT through his nose down to his belly. I expressed from day3 until he was 10 and a half months old. Must go to school to pick up older boys, but I will be back soon. If you have any other questions I can help with, please ask. BRB.

dinosaur · 10/12/2003 15:08

This reply has been withdrawn

This has been withdrawn by MNHQ at the poster's request.

suedonim · 10/12/2003 15:12

I'm sorry to hear about your little one, Eefs. I don't have any experience myself but NCT (0870 444 8707) has an Experience Register which may be useful and also a NCT breastfeeding counsellor (0870 444 8708) may have ideas too. Best wishes.

chatee · 10/12/2003 15:14

congratulations on the birth of your ds eefs

i had a cleft palate operation as a baby at the age of 10 months and besides having to go to the dental hospital for check ups and orthodontic work as a child/teenager it has made no difference to my life whatsoever.....and anyhow most teenagers now have dental work and braces it's the trend and mine were no different to the next....
i can remember that my mum says she used to feed me with a 'lambs teat???' so thank goodness for the haberman teat>>>
good luck to you both

popsycal · 10/12/2003 17:09

havent read the whole thread yet, eefs...but first congrats!!
secondly, i work with someone whose ds has (but has had it corrected) a cleft palate along with numerous other problems
she found an organisation called CLAPA very helpful
look here
they may be of some support to you
good luck!

fio2 · 10/12/2003 21:07

just bumped this up because I noticed anais was posting on another thread.

Hope everything works out ok eefs and congratulations

Angeliz · 10/12/2003 21:14

Congratulations
Have no advice but i'm sure others do!
BTW whats his name? I love reading all the new babies names and seeing whats "in"

Angeliz · 10/12/2003 21:28

ooh, sorry, i've just realised that if you'd wanted to tell his name you would've! (i'm just nosy)

anais · 10/12/2003 21:41

Thanks Fio, I hadn't seen this before.

Firstly Eefs, congratulations. As demented has said (and of course I don't mind you mentioning it, dear ) my ds was born with a cleft lip and palate, and I did express for 10 months in the end.

Aftera disasterous 3 months feeding with a cup (who's stupid idea was that???) we switched to the haberman teat and a squeezy bottle. It worked wonders.

Initially I found expressing very tough, but you do get into a routine - IF YOU WANT TO. Don't feel bad if you decide you can't. You have another child don't you? I didn't at the time, which meant that I had much more time available for the expressing. I don't know if you will be able to feed later. I believe it's much more difficult when the baby is used to the speed of delivery of a bottle - someone else will be able to advise you better on this.

Ds had the palate operation at 6 months (after the lip at a week old). It made a huge difference - he finally started putting on weight and really thriving. It really depends on personal circumstances though. Ds will need further operations on his gums and moving his teeth - do you know whether the cleft affects his gums??? Probably not if not his lip - oh I am really not as knowledgable as I should be.

Clapa are good - best of all is if there is someone local to come and visit you. They also have Xmas parties every year so you can meet other children.

Finally, please, please feel free to contact me through Mumsnet if you want to discuss it further or just feel like a chat or a rant. Anything I can do just give me a shout.

All the best

A xxx

batey · 11/12/2003 07:14

My dd2 was born with a cleft palate. She had her op at 6 months,and although that wasn't an easy time it was "the end" of the surgery. She has regular checks on her speech development and her hearing. She has mild glue ear as a consequence of the cleft. But this has not adversely affected her.

With feeding I managed to express for about 6 weeks. I stopped mainly 'cos I couldn't express very much and found it difficult with dd1 to get the space to express. Whatever you decide to do, don't beat yourself up about it. The most important thing is that he's getting the nourishment he needs. I definitely grieved for not being able to b/f dd2 like I had dd1 but it does pass.

HTH, please do contact me if you want to. Can I just say too that CLAPA are fantastic and very worth contacting. Best Wishes.

rainbow · 11/12/2003 10:21

Congratulations Eefs. I don't really have much experience with babies with palate problems but I so know an adult who has a slight lisp but apart from that no other problems and an 8yo who is now 13yo and have watch the various procedures and ops he has gone through. He deals with peoples comments as they arise and takes it in his stride. CLAPA have helped him enormously.

AussieSim · 11/12/2003 13:27

Congrats on the birth of your ds!

I have a good friend who's ds was born with a cleft lip and palate. She expressed for 16weeks (he was her first) and uses a squeezy bottle (I'm not sure about the teat). The little fella is so cute. I think they do things a little differently over here in Germany and he only had his lip repaired at 3mths and his 2nd operation was scheduled for 8mths but they put it off due to a cold. They were devastated at the beginning and my friend didn't leave the house much with him until his lip was repaired. He is the same age as my ds and in every other way they are the same. I hope they will be great friends as they grow older.

All the best!

pupuce · 11/12/2003 22:28

Hi Eefs - congratulations on the birth of your son. I presume you have seen a breastfeeding counsellor or even better a lactation consultant to give you one to one care/support about breastfeeding and expressing.

My best friend had a (not expected) down syndrome baby.... she had BF her first and this baby would not suck (common with downs syndrome). She expressed most feeds until 6 months old. Very interestingly I went to see her when her baby was 3 months old (she lives in France) and I bottle fed her both EBM and formula and DID notice a big difference (i.e. she would gulp the EBM in one go but was very sloppy with the formula). I think that determined the mum to continue to express (her daughter taking EBM better than formula).

My PERSONAL reaction would be to encourage you to express until the operation as I can't help but feel your son would benefit from breastmilk when going through surgery.,... just a thought. And maybe you can breastfeed him afterwards??

Good luck I am sure it was a hell of a shock !

eefs · 12/12/2003 19:24

I'm finding it hard to keep up with the feeding/expressing cycle, so it's taken me a while to get back here. Thanks so much for the advise and experiences. It really helps to read about how others handled this. I am exhausted at the moment - ds2 is feeding every three hours, feeding takes about an hour and then I have to express for about half an hour - so I'm not getting much sleep at the moment! DP is being brilliant but there's not much he can do about the expressing!
What I've read is helping me to stay enthusiastic about expressing but it's bloody hard work at the moment - I'm just so sore and tired. At the moment I'm planning to express for two months and re-evaluate then - the thought of expressing for 10 months is just too daunting at the moment. Any tips for helping to keep my supply up? I seem to be able to produce loads in the evening but very little all other times. If I stopped expressing during the night (when I get very little in any case) would that affect my supply at other times? Hopefully when he gets a bit bigger he'll sleep longer between feeds and maybe then expressing won't be such a chore.
Anais - thanks for telling me about your ds - hope he's ok now? I tried cup feeding for, oh about 1 day before I gave up - I can't believe you managed three months. The Haberman teat is working very well, I'm so grateful we have something that works. Now to find myself an electric breast pump........

OP posts:
SoupDragon · 12/12/2003 19:37

Eefs, have you thought of hiring an electric pump from the NCT?

Jimjams · 12/12/2003 20:26

congratualtions eefs. My cousins ds2 had a cleft palate- lip was OK. He has had a lot of operations, but I think his was quite a complex case. I think he has had his last op for a while now (ever maybe)- he is now 8. He had to have this last op as his speech was quite badly affected- he now speaks very clearly so it has been worth it.

I know that feeding him was difficult even with the teat. He was born before I was a mum, and before I lived close to her so I'm not sure how long she expressed for.

Good idea from soupy about the NCT. Also maybe worth looking into whether there is a milk bank near you. I had both ds's in Bromley and there was one attached to Farnborough Hospital (now renamed- Princess Royal or something- not sure we no longer live there). They would be able to give loads and loads of advice about expressing. 2 peple run it who are very friendly- might be worth trying to track down their number.

Jimjams · 12/12/2003 20:29

Here's a link with the main hospital number

www.bromleyhospitals.nhs.uk/PRU%20Hospital.html

they would be able to give you the number of the infant feeding centre milk bank place (can't remember its proper name). The people who run it are so nice- i'm sure they would be happy to give you expressing tips over the phone- they may also be able to recommend different pumps.

anais · 12/12/2003 21:27

Eefs - I remember that stage so well - it does get better though, honestly.

I'm not hugely knowledgable on supply. The only time I expressed through the night was when my supply started to reduce and for a couple of nights I got up and expressed 3 times in the night. The rest of the time I didn't though, just did it very late and then first thing. I do know that lack of sleep is likely to affect your supply though, maybe try cutting it out and see what happens. Also, stating the obvious, maybe, but easy to forget when you have a little one - make sure you are eating properly.

Try not to plan too far ahead - just handle a day at a time.

My ds is wonderful now He's a very bright, articulate and happy little boy. We have annual check ups, with all the various different departments, but otherwise it has no effect on our lives. The next operation will be sometime when he's between 7-9. After that, who knows?

As soupy says, the NCT hire out electric breast pumps, but I borrowed mine through my midwife. FWIW, it worked initially, but then I switched to just expressing by hand, which I found far more effective longer term.

And I meant what I said before - if I can help in any way, let me know Thinking of you.

batey · 13/12/2003 20:48

I should have added before about breast pumps.In that I was loaned a double electric pump for as long as I needed it at no charge from the hospital where she had her surgery (as in not my local hospital). It could be worth checking it out where you are The fact it was double was a big help, but I have to say it was designed by a man as once you'd got both boobs into postion I had to use my toes to turn the thing on and adjust the dials!!

Have to echo "it does get easier". It is tough at the beginning. Dare I say, what about mixed feeding? It was what we did for a while and it did make things easier. I knew she was getting some b/milk but the haberman/formula also gave me time to rest/spend with dd1 etc (our sitation was a bit different in that dd2s cleft wasn't noticed,despite numerous checks,for 10 days so she ended up being rushed to hospital/dhydration blah blah.And dd1 was in on all of that so more needy with me etc etc). Best wishes and keep posting.

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