Cleft Lip and/or Palette

[DaintreeDream]

Wow it seems like our little cleft babies are all growing up so fast. Matilda turned one last Thursday.

Nicole, I am sorry you have been having a bad day, it is very frustrating and sad when they vomit and in turn throw up their tube. I too had to put a new tube in last night, Matilda has got to the age where she tugs at it and the tape somes lose or sometimes she hurts her poor little face, she looked so lovely without the tube, I didn't want to put it back in either.
Matilda is pretty good with getting the tube down these days though, no tears anymore, however she has learnt to block my path with her tounge and the tube ends up poking out of her mouth, so I have to distract her with a dummy.
Things do get easier, even if she is still on the tube, as much as I would love the tube gone, it is easier now that she is a little older and we have got used to the whole thing.
Big , as you said there are good days and bad, I hope tomorrow is a good one for you.

[adele]

Hi Nicole (welcome) and HI to all you other lovely ladies

It has been a while since I was on here so just htought I woudl see what you have all been up to. We have just been back to Brissy for Alex's second set of gromits. We have another hearing test scheduled in a few weeks which will hopefully now give a much better result than the last (with the old gromits). How are all your brave boys and girls going??

Nicole, I do not have any experience with PRS - Alex was born with a complete unilateral cleft lip and palate (he actually had next to no soft palate). We also had breathing issues at first but they thankfully sorted themselves out quickly. We did use the squeeze bottles for a while. Alex was a habermann baby until after his first op and then we had to use a hard spout. As he had no palate (and now no plate) he couldn't suck so we had to combine this with the squeeze bottle. It took probably a good week to get him used to just swallowing the amount squeezed in. It took practice for both of us (and was quite messy and very frustrating at times - I think I woudl waste twice as much as he took at first) but we got there in the end. I guess all I can say is stick with it chick - you're doing a great job and it is totally normal to feel the way you are feeling sometimes- I think it would be fair to say we have probably all had our moments. Hope it helps a bit to have these sorts of forums available to chat.

[leesha]

Hi Girls!!!!

Been awhile since I've had a look see in here and it's been pretty quiet!!!
I have a question I hope someone can answer for me!!
I can't seem to get a consistant answer out of anyone.....

What are your chances of having another cleft lip and or palate child?

There is no family history of it on either side and all taj's chromosome count was normal (had an amnio) We didn't have genetic counselling as we didn't think we needed to and they even said if there is no family history then they can't really give us a correct answer and there isn't a test you can do to test for it!!

I hear it's around 4% is this correct???

Can anyone give me some of there own advice or info??

Hope you are all well!! Because it's so quiet i'm guessing you are!!

Cheers!!!
xoxoxoxo

[Nettie]

sorry Leesha - I don't know.

We've been offered a genetic test to determine this, but we're thinking we won't bother. I mean, it's not going to influence our choice of having further children, so why bother? We'll accept whatever comes...

I hope someone else can help you!

[adele]

Hi Leesha

We didn't do genetic testing and as far as we know there is no history on either side for us. Not sure how accurate this is but we were told by specialiasts at cleft clinic in Brissy that it is 1 in 8 the first time and then it doubles every time after that so next time around is 1 in 4. Having said that we have met lots of people who have only one clefty in the family - stats are only a guide.

Hope that helps a bit

Cheers

Del

[FionaJ]

Hi everyone,
I have only just found this forum and read it right through and thought I'd put my story up. Wished I had found it last year. My 3rd ds was born a year ago yesterday. Born with an incomplete unilateral cleft lip and palate. OMG what a year it has been.

He was born in a pvt hosp, we knew he'd have a cleft lip at 20 weeks, but could not determine if the palate would be involved but 2 min after birth my Pead told me. He ended up in special care like his 2 brothers before him for completely different reasons (no clefts with them). Glad it was the same hosp, have gotten to know the nurses well now after 3. We tried the QLD Cleftpals with the Chu Chu teat straight up but it was too much milk and he was a c-sect baby so his tummy was full of fluid so of course he vomited it all up(what baby drinks 30ml the day they are born?).

Drs put a tube in to feed. Tried the pidgeon bottle/teat given to me by the Cleft nurse from Westmead Childrens hosp (She was my angel). Bottle was a pain to use and really slow 1-2hrs, could not be sure he was getting enough and he would get sooo tired. Didn't put on much weight either. I was expressing at the same time as feeding, neat trick I worked out, wore a mat bra and tucked the double suction cups in the top of the bra cups, so they were held in place. Expressing hands free with a double electric pump, then I would feed bubs on my lap, it really helped with let down and time efficiect during the night. I lasted 10 weeks, he was not putting on enough weight with EBM so I I began formula, I was taking lots of fenugreek, Chinese herbs and Motilium. I didn't have good supply with the others either. Getting a really sore hand/arm too from the Pidgeon. The Westmead nurse gave me a MAM bottle. Lovely and soft it is heaven!!!!!! It fits the Chu Chu teat and Pidgeon tops. Can put the MAM in the microwave too. MAM bottles can be bought from Cleftpals NSW too.

I was warned he'd fail the hearing screen and he did but hearing loss is all through my family so no real surprise, at 4 weeks he had little tiny pale blue hearing aids.

We had the lip repair in Jan which went fairly straight forward, not much fun and they do not like drinking for a day or 2 after that. He had splints and a bar called a logan's bow. Glad for both as they really stopped the knocks and bumps. Splints were a pain but have since found some really good ones from the States that don't come off and have venting between the ribs, nice, cool and soft for summer and his Palate op.

He developed this chest rattle in March after a cold he also had it between 4-9wks and finally got diagnosed with tracheomilacia (soft windpipe), and has reflux as well. He was also born with a little hole in his neck which pulled up like a dimple call a brancial fistula, that along with his hearing loss, an ear pit and a very slight deformity of the ear led to a diagnosis of Branchio-Oto-renal syndrome. Cleft can be a feature of that. It is a dominant gene thing (ie 50% chance of getting it) on the EYA1 gene and little bubs copped the lot. His brother also has mild mod hearing loss, along with me and my dad.

I went to the Cleftpals conf in Syd this year and the Childrens medical institute is doing a lot of research into genes associated with clefts and they have identified a few genes too. I saw some research someone was doing and out of the 40 families that there was a cleft only 2 families had 2 kids with a cleft. However that is not a large enough sample size, though his theory is that maybe a major traumatic event in the weeks around conception disrupts proteins and could bring about a cleft. All yet to be proven.

On the 3rd attempt the palate was finally repaired and I had the 2 longest nights of my life!!! Ended up in the same bed together he had a tube up his nose for 2 nights, thank goodness for Morphine, I needed some too. They suctioned him every 30 min, HELL. But it is all over now and he is feeding pretty well, not drinking so good though.

I waited until the 2nd failed palate op for solids as they kept coming out his nose, I was doing cereal in his milk since 5 months ( he was hungry). He got used to the solids even with the cleft, plenty of fluids helped. It has been 6 weeks now and his sleeping has gone back to normal and he is looking like a normal bubs but I always thought he looked beautiful and still miss his big wide smile.

There is more to this story but I have bored you all now. Hoping for less doctors over this next year.

One other thing we get carers allowance the non means tested one from centrelink. Redo the form with a more compassionate Dr.

Cheers

[Nettie]

welcome Fiona!

Sounds like you've had a lot to deal with . Feel free to ask questions, vent and share in here!