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DD was born with a cleft palate......next operation is coming up :(

11 replies

charllie · 10/06/2012 00:50

I gave birth to my DD in 2006, i had always wanted to BF but she couldn't. I had her on the Sunday morning and MW after MW came by the bed to help get her to latch on. She didn't. So they sent me to a breast feeding group. That didn't help either. I was sat in a room full of women, with my breast in a bandage, holding it up. Was horrible!! So i went back to my bed and tried and tried all day again (by now it was Monday) DD was starting to get upset, she was obviously hungry. Yet another MW came over to help, this time though, she put her finger in DD's mouth and then said she was just going to speak to someone and would be right back. They came back together and sat me down, told me that my DD had a Cleft Palate. I was devasted! I asked the question, will she need to have an operation?? I already knew that answer. My tiny little baby was going to have an operation, to be put to sleep and have an operation!
The first operation was done when she was just 6 months old! Another operation to have grommets put in was done when she was a year and a half, this cleared her speech up so much! She went from saying 'mamy' to 'baby' within days of having that done. Then last year, another operation for her cleft palate. Before the operation, she had to have a camera up her nose :( that was horrible, she cried and had to talk when it was up there. The operation was done in April last year. I was dreading it, having a child who could talk etc, go through an operation, i wasn't looking forward to it. But do you know what, she's an amazing little girl! She was smiling within minutes of waking up! We went into it really positively with her, she was excited that she was going to be able to say 'bus' instead of 'buh' bless her. Afterwards, it was hard. She had to go back to eating mush. Wasn't allowed any lumps for 2 weeks, then just soft foods for the next 2 weeks. I remember trying to encourage her to eat and drink in the hospital, knowing that they wouldn't let us home before she did. The boy in the bed next to her, with the same operation, he had to have suppository for his medicine as he refused to take anything through his mouth :( was heartbreaking to see his mum getting so upset.
Well that operation hasn't done as good a job as they were hoping, the speech therapist can't do anymore for her, she's really pleased with how well DD has done, so am i. So proud of her. But she still talks with a nasal sound to her words and i dont' want it effecting her confidence at school etc. Sometimes people have a little trouble understanding her, i don't want that for her.
We have an appointment for her on 21st June for the camera again, i'm preparing her for it, it helps that she's had it so that she remembers. She's looking forward to seeing the back of her mouth on that tv screen again, she liked that last time (once she stopped crying) fingers crossed she'll do well with it. I found it really hard last time, had to bite my tongue so hard to stop myself crying. Then her operation is going to be in August. I'm dreading it. It doesn't get easier, the more times you go through that. Leaving your DC laying there, in the hands of strangers, its so hard! Breaks my heart every time! The first two operations, i was with her father, the last time i was with my new partner, i coped with that one so much better. He was an amazing support. It was him that got her smiling as soon as she woke up! It helps, knowing i'm going to have him there by my side again. But the thought of going through that, again! Its hard!
I sometimes blame myself for everything she's had to go through. I know its not my fault, but as a parent, i think thats natural, isn't it?

OP posts:
notcitrus · 10/06/2012 04:10

Hope the operation goes well. Suspect it's much worse for you than it will be for her!

tara0202 · 10/06/2012 06:27

Aw, it is horrible them having operations. My baby just had one last week aged 3 weeks :-(

I really hope your little dd gets on well :-)

(((((Hugs ))))))))

Madmum24 · 10/06/2012 07:31

I know how you feel! Three of mine were bor with a cleft lip and palate (we have no family history by the way!) and it is horrible putting them through operations, but it is great that they are done early so they won't remember much of it. Two of mie have had pharyngoplasties (the op to improve their speech) which helped, but I am surprised about the camera test as in our hospital they never use it on children, they use a special x ray test where they have to say some words and that assesses whether or not their palate is working properly.

anyway hugs to you and your little one, i know it's hard but it is one of the nicer things to have. In and out of hospital within 2-3 days, so make sure you arrange something special afterwards, and also a bit of retail therapy helps, lol.

GhouliaYelps · 10/06/2012 07:39

Oh really hope it goes well for you all. What a lovely way of writing you have that was a really lovely heartfelt post.

charllie · 11/06/2012 21:35

Madmum24 they do the xray here too and when she had it done last year and this year, they couldn't see enough of the palate, so the camera was the other option. Means they can see it from above, rather than from the side. DD is the sort of child that as long as she knows what to expect, she copes pretty well. Just hope that this time, she finds the camera easier. This next operation is going to be on the back of her throat, he descibed it as a speed hump, to bring the throat out so that the soft palate can create a seal. Can't remember the name of the operation though :/ Clefts aren't in my family either, but have been told that if i were to have another baby, there is a chance of that baby being born with a cleft. How old were your two when they had the pharyngoplasty surgery? We're hoping to go to cornwall afterwards (we done that last year too) so should be a nice way for her to recover :)
Thank you GhouliaYelps :)
tara0202 hope your little one is ok now after their operation and thank you :)
I think you're right notcitrus, that it is harder for me than her, she's so brave and just bounces back, the amazing thing about children i guess :)
xx

OP posts:
ledkr · 11/06/2012 21:44

Hi charlie My dd was born in Jan 11 and had feeding probs ending up in jaundice,she had an undiagnosed cleft palate too. I was devastated and cried for days. Then she developed pneumonia at 6 days from inhaling milk and was on itu for ages.
She had her op at 10 months and is now doing really well apart from a bit of glue ear.
I knopw exactly how you feel but I just was glad she could have the surgery and live a normal life afterwards.
The pain relief was so effective that she hardly suffered.
Can someone else go with her for the nasal camera? I never stayed for dd's ng tube as i found it too distressing and saw no point in being there do dh did it as he could handle it better.
Keep posting here for support,mn has been my saviour.

charllie · 11/06/2012 22:06

How old was she before they realised she had a cleft palate? My DD had glue ear too, which is why she had the grommets put in. She also had a hearing aid last year for that too. And another check up this year before her next operation. Is your DD all better now bless her?
I don't think i could send her there without me, even though i find it really hard to see her like that, i feel that it needs to be me to be there with her (her father is an arse and doesn't go to appointments and my OH can't get the time off work)

OP posts:
ledkr · 13/06/2012 16:30

She was 4 days when a mw finally noticed it even though I pointed out what looked odd when we were still in hospital and were told it was "her tonsils"

She seems ok now although herrecent hearing tests werent great,we have an appointment next week to see about grommets.

My ds has kidney failure and when he was ababy had lots of procedures.I found he took it all in his stride as he got older. I hope your dd does too.

Did your dd have a cleft lip?

Madmum24 · 13/06/2012 19:11

Charllie the speed hump sounds like the pharyngoplasty. Mine were both just under 4 when they had it done, thankfully they coped really well and we were home the next day and pretty much back to normal. Bring a box of ice lollies with you to keep in the freezer on the ward, our ward used to supply these but since the NHS cuts you have to bring your own.

dubz · 13/06/2012 22:40

Hi Charllie. My DS was born in 2010 with a cleft palate, so I can understand a little of what you are going through. We have been very lucky and although DS has minor hearing loss he got through his operation fine at 6 months and since 18 months has been having regular speech therapy. He still doesn't say much, but what he does say seems to be fine (plenty of p and b sounds). Fingers crossed his palate is working fine and hopefully he will not have to have any more operations.

I hope this next operation goes well. Your OH sounds like a great support and although he won't be able to be there on the day, I'm sure his support will help in the run up to the opertion and afterwards. Which hospital are you with? Is the surgeon one that you have been with before? I think I would be happy with our cleft surgeon again since she did a good job last time.

Finally, have you joined the CLAPA facebook page? There are a lot of parents on there with loads of advice and support.

(waves at ledkr - I've spoken to you before about clefts, before but I'm a frequent namechanger so don't expect to be recognised)

ledkr · 14/06/2012 21:38

dubz Hello,I think i can guess who it is. Im amazed at those who have had more than one baby with a cleft. I know the risk is higher but we arent having anymore so no concern for us.

DD is now 16 months and seems fine,she isnt saying many words though and has trouble hearing low level noise so im just watching how things will develop for her.

I cant do the clappa thing i get too upset.

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