Newborn with cleft palate,anyone offer me little support

[ledkr]

Hi,i had my dd 6 days ago by section,whilst in hospital i pointed out to the mw that her throat seemed "too open" i was fobbed off,she also wouldnt feed well and sucked and sucked for ages but hardly made a dent on the milk level.We left when 3 days old and she was still taking a max of 30mls per feed and was drowsy.Next day the community mw picked up the cleft in the soft palate and sent us back in as she was also very jaundiced by now.She had photo therapy and we had the specialist nurse in to bring us the mam bottles and teats.We have a specialist appointment on the 18th.
We are still in shock but gratefull its not more serious,she is beautifull.Is feeding better but still drowsy and will not take it if she doesnt want to.Shre has gained a little weight and her jundice levels are still below the treatment line.
I just wondered if others with similar experience could offer us a little advice.I have noticed her mouth often looks mucousy and dry and she has a raspy sound in her throart and often coughs,i presume this is the milk catching in the cleft and have read about offering a little water after the feed.Little things like this would be in valuable to us at this time,thanks.
ps i went on the forum but im not ready for it,hearing aids etc need to get her thriving first.

bump

thanks for the bump might move this to annother topic.what do you think?

A friend of mine has a little boy with a cleft palate. I don't know all the details but I remember him being tube fed for a good few weeks, so it sounds as if your DD's is less serious than that.

He had surgery at 6 months, and by the time he was a toddler you'd never have known there was anything wrong.

He had speech therapy from an early age and had grommets in his ears, but you'd never know now, honestly.

Best of luck for you and your DD.

Congratulations on the birth of your dd, ledkr :) It's good to hear that she is feeding well now and her jaundice ha gone. I am amazed that her palate wasn't picked up by the hospital .

I don't know anything at all about cleft palate, but do have experience of having a baby with an unexpected condition - ds was born with a missing bone in his leg. It's pretty daunting to think of your baby having surgery, and worrying about what it will all mean. But the treatment of cleft palate is now very sophisticated and successful, and I can promise you that babies are exremely resilient about medical procedures - it's the parents who feel the strain! My DS had 4 operations before he was one, and when he woke up with his leg in a thigh to toe plaster, he just giggled and looked on it as a new interesting experience.

I hope you get some more experienced and relevant advice - but don't worry too much about needing surgery.

Congratulations on the birth of your beautiful DD! I don't have any advice, but wanted to say don't worry too much - you are doing absolutely the right thing already in getting the medical attention she needs. Don't let this overshadow your first weeks with your little one!

My DN was born 21 years ago this August and she had a hare lip and cleft palate. She had to be a certain weight before they repaired her lip and then about 6 months when they did her palate. She had the special teats you mentioned for feeding before her repair and did well with them. She didn't need to go for speech therapy and can eat drink and talk the same as anyone else. You are lucky that your DD doesn't have a hare lip aswell as people have been cruel to my DN over the years about that,she will be fine after the operation, congratulations

Good friends of ours have a DS who was born with a full cleft, palate and lip. And we also have a relative who was born with one, lesse severe, but also affecting his lip. Both of them have now completed all their initial surgery, although they may need dental surgery later. Hopefully, if it is just soft palate this won't be an issue for your DD.

Both the little boys I mention have perfect hearing, look completely normal now, hardly any scarring to see etc. The first has perfect speech and has never needed any therapy. The second has poor language skills and behavioural problems, but neither of these are related to his lip.

In both cases, they had the first surgery by about 3 months old, and again about 6 months and 9 months, but these were both more severe cases.

Surgery and support for people with clefts has significantly improved since susue's niece was born. I used to work with a young man who would have been similar age to her, maybe a year or two older, and he had obviously not received anything like the same level of surgery. It was much more obvious in his case.

Good luck. She'll be perfect even more perfect) before you know it.

Congratulations on your new arrival!

My DS was born with a unilateral cleft lip and palate which was picked up at the 20 week scan. He is now 7, and although has had a few operations now, is a strong, healthy and happily little boy. Am sure that you will be referred to a specialist cleft team - they usually have nurses specialising in feeding who are a massive help and support and mine certainly had more specialist knowledge then the HV. In the early days I tried to focus on feeding little & often as my DS had to work alot harder to feed. Also try not to get to hung up on the weight charts: the centiles are based upon babies without feeding problems!
Best of luck to you - its a stressful time, but am sure you're little one will grow from strength to strength :-)

Sorry, coming to this late.
My dd was born with a complete cleft of the soft and two thirds of her hard palate. She is now 6.
I myself was born with a small cleft of the soft palate.
Feel free to pm me if you want to ask any Q's.

Am hoping things have settled down a bit on the feeding side and that you have met your cleft team/feel reassured.
As others have said, it can be immensely stressful so take it easy . Best of luck.

My cousin's ds1 was born with a cleft palate 7 years ago. They didnt pick up on it until 4 days of him not being able to feed.

They bought www.mothercare.com/Medela-Special-Needs-Feeder/dp/B000JI1UAM?ie=UTF8&ref=sr_1_46&nodeId=44555031&sr=1-46&qid=1298539812&pf_rd_r=05KJ01A08TN64G1DWFGW&pf_rd_m=A2LBKNDJ2KZUGQ&pf_rd_t=101&pf_rd_i=42861041&pf_rd_p=231490867&pf_rd_s=related-tab-3-5these to feed with because you squeeze the bottle to help.

He had an operation at 6 months to repair the palate and now you would never know.

Hi! If I could point you in the direction of
www.faceforward.org.uk
you'll find lots of Mums and Dads with similar experiences, it's a great support to me (my son has a UCL).
Hope all is going well with you x

I was born in 1968. I had a cleft palate. It was detected immediately as it was quite bad.

Obviously I have no memory of this as I had an operation just before my first birthday which was very advanced for its time. A sort of plastic surgery.

My parents say that feeding was diffficult as a large section of the top of my mouth was missing, but I was never underweight or in any danger.

I had annual check ups until about age 5 and I remember the last one.

My hearing, however, has been a lifetime of hassle but certainly nothing major. (All linked to the cleft palate). I had regular gromits until age 13 am really prone to horrible ear infections. Now have to ensure I use specially fitted ear-plugs for swimming/showering etc.

My speech has never been any different to anyone else's, despite the hearing issues.

Hearing problems are not always an issue for cleft palate babies. Do not assume the worst.

I needed a brace on my teeth at age 14 and the orthodontist could see there was something different about the roof of my mouth from the mould she took, but was amazed to hear it was a repaired cleft palate. She had never seen such a beautiful repair - her words!

There are some places in the world where, up until quite recently it has been normal practice for newborns with clefts to be taken away and killed as they have no hope of survival without medical intervention which may be expensive/unavailable etc. There may even be some places where this still occurs. Either way, there are certainly places where the babies do not have to benefit of the medical care we have here in the UK and there are charities that help these babies.

I do not have very much money but have never failed to make an annual donation. Seeing a documentary about the slaughter of babies like me changed my life.

With the help of medicine I have led a normal life albeit with a few hearing issues.

I am sure medical science has moved on enormously from my experience and I wish you well with your beautiful DD.

To my mind, every newborn is a perfect miracle.

Sorry for the long post.

Sorry - have just realised that this thread comes from February!

Hope everything is ok and that you have had the medical assistance you need as well as the reassurance and love you deserve.

Moved to here from the AIBU thread. Just wanted to say that you sound like you are doing well Lekr, and if you (or anyone else) would like to discuss cleft palates andor lips just ask me. I was very fortunate in that one of my close friends had a baby with a cleft palate and peirre roban (sp?) a couple of months before my DS was born with his cleft palate so I had someone to ask questions, and to share worries and experiences with. It really helps to talk to someone who has experienced the same breastfeeding dissappointment/weaning - food out the nose/ear infections/operations and all the other stuff that comes with clefts!

My DS is now almost 1, and since his operation (7months - Dr Mehendale in Edinburgh) is doing really well.