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
Newcomer 
. Feel free to ask questions, vent and share in here!
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.
.
. 
Linear Mode
