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Thread: Cleft Lip and/or Palette

  1. #163
    FionaJ Guest

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    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

    Last edited by FionaJ; October 2nd, 2009 at 10:44 PM. Reason: spelling

  2. #164

    Join Date
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    welcome Fiona!

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

  3. #165
    FionaJ Guest

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    Thanks

    It is the first time I have really written at length about the last year, felt a bit cathartic. I was always just living a few days at a time but when I look at it all together no wonder I was stressed and exhausted.

    I go back to work on Tues 3 days a week. I am nervous as I don't know how I'll fit things in but at the same time a bit of normality and less medical stuff I am sure will do me good.

    I also have a good friend who's little girl a couple of months older than mine has PRS.

    I am now doing some work with Cleftpals NSW and are looking into getting a grant to buy bottles for new mums. Apparently some heath funds cover feeding equip if it is medically necessary.

    Do any of your bubs have microform, basically a near miss for a cleft lip but leaves what looks like a scar line it is actually what Joaqin Pheonix was born with, he didn't have a cleft lip. Mine has one on the other side of his lip from the one that was split.

    I am also finding bubs losing a bit of weight 700g after the palate repair. He's not drinking as much and fussy with some foods, got a bout of oral thrush too. Not sure what to do.

    Cheers

  4. #166

    Thumbs up

    Hi Fiona

    Welcome. As Netty said, this is a great spot for venting and just knowing you are not alone.
    With the thrush, not sure if you have tried this but I put some acidophilus powder in Alex's milk - it seemed to help him.
    Sounds likeyou have had a real time of it this past year - do you have support?? I was a first time mum so i can only imagine how much more difficult it must be having other children to look after while dealing with bubs requirements over the past 12 months. I guess my words of wisdom HA HA HA are that things get 'normal' and it really does get better/easier from this point. ALex is a real boys boy and doing everthing like other kids his age now (he has dodgy hearing too. It's under review as it is hard to pin point with all the ear infections he has had) , I am back at work and .....yes we have some extra ongoing stuff to deal with but ......so far the first 12 months have proven to be the hardest and the last 6 months have been (cleft- wise) FANTASTIC !!

    I hope your return to work goes well and bub is back on track real soon.

    Cheers

    Adele

  5. #167
    FionaJ Guest

    Default great idea!

    Great idea about the acidophilus powder, where do you get it?

    Good news that things should settle down cleft wise I had my cleft clinic follow up yesterday and they said they'll see us in 6 months which is a nice break from things. Also said they wold not fix his microform and brancial sinus for 1-2 years. Neither are bothering him so happy about that too.

    Did your bubs do a lot of "ga ga" since his palate op, lots of back and voice sounds, ba, wa mum, ga, ra, u, huh etc. makes sense as these are the loudest and they reverberate in his head. Did they need speech therapy? No "da da" yet to DH's disappointment.

    We have to work on getting him keep his hearing aids in, keeps pulling them out from under the pilot hat and chewing them .

    I do have a wonderful, supportive husband who has handled the older 2 boys (6&3) fantastically. I kept Mr3yr in day care 3 days as he gets realllly bored and up to mischief. He also regressed and took 6 months to toilet train which we started just before bubs was born. Mr6yr was going to school and has stepped up and been pretty helpful if only he would stop fighting with Mr3yr.

    My folks have been amazing they live only 10 min away and close to Mr6's school. They would help when I had so many appts, mum's not working. My MIL has also stepped up for a change she lives even closer, been nice even. FIL died suddenly last year when I was 7 wks pregnant and it does cross my mind that the stress did not help bubs.

    Must admit Westmead Hosp overall has been wonderful and organised which helped. I could not have coped without DH and my parents. There have been times where I thought I would lose my mind, often over Mr3yr and not getting enough time to myself. Always felt tired, kept getting colds, trouble losing baby weight, hard to get into a routine etc.

    My GP has helped too but waiting for hours to see her even though we had an appt did not help. I am so keen to cut down on Dr's appointments, be nice to go a week without one, I think next week will be a first one for some months.

    Nice to know I'm not alone in all this experience, although I know everybody has to deal with their own challenges in life and this is just one of them. Bubs is such a beautiful baby with the most amazing blue eyes, such a little flirt and happy, snuggly disposition. Quite the inspiration. There is certainly something special about clefty kids.

    Thanks
    Fiona
    Last edited by FionaJ; October 3rd, 2009 at 03:26 PM.

  6. #168

    Default

    Glad to hear you have a great support network Fiona - it makes all teh difference doesn't it. Nice to hear the medical profession have all been supportive and organised also. Feel for you with the hearing aides - Alex doesn't have them ... yet .... and I am dreading our next check in a months time because I know if he needs them we will have all sorts of issues keeping them in

    You get the acidophilus from teh chemist or health store. I used capsules - I just broke them and put half the powder contents in teh morning bottle and half in the night bottle but I think you can get different strengths etc and also I think you can buy it in powder form. i found it was a nice easy way to get it into him without a fuss.

    My FIL passed away in the first few weeks of my pregnancy too (although we didn't know we were pregnant - thought it was never going to happen) so we flew international to be there at the end .... we heard there is a theory this can have an impact but apparently not proven yet so specialists do not take it into consideration at this stage. You are perfectly correct though - these clefty kids are very special

    Cheers

    Adele

  7. #169
    FionaJ Guest

    Default

    Thanks Adele ,

    I'll give the acidophilus a go. He probably really needs it after all the antibiotics and steriods he's had.

    The med profession have been good overall, though still feel I have seen way too many of them, spent to much time waiting and often have to re-tell the story or re-educate them each time. Maybe I am developing 'doctor burnout' if there is such a thing .

    Now I have to find ourselves a really good ENT that knows about clefts and Branchio-Oto-Renal sydrome which occurs in 1:40000 so I estimate about 100 people in Syd have it with 4-6 members in my family. Joy!!

    Sorry about your FIL too.

    Birthday party today for my special little one.

    Cheers
    Fiona

  8. #170

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    A big happy birthday to your special little guy - what a big year he has had. Best wishes for a wonderful (and not too doctor filled) year to come.

    You are right about haveing to re-explain etc with the docs - frustrating. We decided to go private for the ops, but we have to skip back and forward for the cleft clinic, speech therapy (that has been a mission to coordinate up here as there are very few - public or private), orthodontics etc. It is a bit of a juggling act but I think we have the hang of it now (I just wish it was explained to me at the begining as it would have been easier to make happen). We have a GREAT team though - the plastic surgeon is amazing and ENT is GREAT. All in Brissy (we don't have many specialists to assist Alex up here so we decided to keep all of them in one spot seeing as we have to travel for 3/4 of it anyway) - saves the confusion. We have found David (ENT) fantastic and he seems to really know his stuff. He works with the cleft kids (which is why we chose him) as a part of the mater cleft clinic as well as having a private practise. The ph 3831 3131 - maybe he can provide you with a specialist in your area that can assist (we found that just rining up to explain your circumstances etc has been really useful in getting to the right person - teh help has come from some way out specialty areas and has been great).

    Have a fun party

    Cheers

    Adele

  9. #171

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    Hi and welcome Fiona!!

    It's a shame you didn't find us earlier but we are here now so look forward to more chats!!!

    HEY GUESS WHAT girls???????????????????????????????????? I'm pregnant!!! Just gone 13 weeks and had a dating scan today!! Bubs is all good and waved at us!!! Am very excited but a bit aprehensive about what the 20 week scan will show us this time!! Will it happen again??

    Who knows but we did find out that it definately was not a genetic thing and just a structural mishap! At least if it is to happen again we are all prepared and full of knowledge!!!

    So I'm not due till 9th April.....6 months to go!!!!!! WoooHoooo

    xoxoxoxoxoxo

  10. #172

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    CONGRATS Leesha - How exciting ........

    If you can hold off until the 17th then your new bub will have the same birthdate as Nettie's Liam and my Alex LOL

    Well done mate - very happy for you!

    Cheers

    Del

  11. #173

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    Congrats Leesha! All the best!

    And LOL Adele - I was thinking the same thing! Actually *one* of Liam's due dates was the 9th April!

  12. #174

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    Hi everybody hope you are all well!!!!
    Just wanted to let you know that we had the 20 week scan two weeks ago and everything was ok! No cleft detected so we are so relieved to be able to sit back an enjoy the rest of this pregnancy!!

    So much happening at this time of year my head is spinning! We just moved into a new house that we bought....trying to get all this christmas shopping done is doing my head in!!!

    I hope you are all well and you all have a great and safe christmas!!

    xoxoxox

  13. #175

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    Hello!

    Glad you received good news and I hope you have a very uneventful pregnancy and easy birth (followed of course by a perfect little bubba!).

    Have a safe and enjoyable festive season!

  14. #176

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    Congrats Leesha

    So glad to hear your GREAT news - what load off for your guys. Relax and enjoy the rest of your pregnancy.

    Have a wonderful festive season everyone - Trusting this is a happy time for your all!

    Cheers

    Adele

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