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Daniel was born 23.2.05 after being nearly two weeks late, two days of being
induced he was born within 4 hours with no pain relief (apart from an
aspirin!). He was my fourth boy, and my easiest birth, so it was with some
shock that my husband, Tim, found him not being able to breath very well
after he was handed to him (he sort of blew bubbles). A quick check by the
midwife in his mouth, and I saw her say the word "hole" to the other
midwife, and he was taken away to NICU, where he stayed for two months!

Up in NICU a doctor pointed out to Tim (I was still in the labour room, left
alone for maybe 4 hours!) that Daniel had a small chin and low set ears
(they actually said that this had been mentioned in the labour room which
was a lie) and it was a TOTAL shock. Cleft palate, small chin, low set
ears, what on earth did all this mean?

Throughout the next couple of days, Tim researched on the internet Pierre
Robin Sequence, as this had been Daniel's diagnosis. I am not sure if he
looked at the CLAPA website, but I did later and didn't find any helpful
information about this type of problem as it is quite different to cleft lip
and/or palate.

The internet has a Pierre Robin Sequence website, based in America and not
at all suitable to the UK health system. Tim printed out, for me to read in
hospital, a web page called "Chase's story" and although uplifting as things
progressed well for "Chase" in his life, it was to be the start of massive
heart ache for us, as we thought Daniel had jaw distraction, trachy and
possible gastrostomies to look forward to.

Daniel could not suck so had to be tube fed. I was so disappointed as I had
planned to breast feed him and I really missed that close contact that comes
with breast feeding. I was really encouraged in NICU to express for Daniel,
and long hours were spent with me "double pumping" to get lots of breast
milk for him. Daniel had a prong stuck up his nose too to keep his tongue
from blocking his airway, and I hated this with a vengeance. Three weeks in
NICU it was decided that he could do without it, his SAT's did go up and
down, but the dreaded tube was out! The care Daniel got in NICU (and me!)
was superb. There was, at that time, a cleft nurse called Sandy, who helped
us through some really dark times, and Daniel left hospital two months after
being born. What a totally different story from what I thought would
happen, go to hospital, be induced, be back a day later with my new boy.

I had also fantastic support from the Neo natal outreach team who came to
our house lots throughout the weeks, and also from Sue Burton, the Cleft
Nurse. The Cleft team has been centralised to Addenbrookes for the East of
England, which is not that brilliant if you live in North Norfolk, but I
always felt I could contact someone if needed to. Sue in fact had a hard
job as she had to tell me it was unlikely that Daniel would take to a
bottle very quickly, as he was using as many calories trying to suck, as was
in the milk, so exhaustion all round. Not something I wanted to hear, but I
stuck with the tube feeding for 10 months, and Daniel was finally onto a
bottle just before his cleft op at a year old.

Daniel still has problems due to his Pierre Robin Sequence, and other
problems not connected with it (he has infantile scoliosis). His chin has
grown a little, but not enough to give him a big enough airway, and last
April, when he was just over 3, I, with a heavy heart, agreed to put the
tube back up his nose at night. This has improved his oxygen intake at
night dramatically and he now has a more restful sleep, but it does mean
that I don't really as I am always worried about it getting blocked. He
suffers from lots of chest infections, and had really bad reflux, which went
undiagnosed for years. Daniel had been sick and suffered with secretions
from day one. When he was 2 1/2 I finally got some reflux medicine, and
thankfully he has stopped being sick every two days! The sickness has made
a huge impact on his ability and willingness to eat food, and now Daniel
just has fortified milk as his source of food. I can not believe I have got
to this state with Daniel, as we are a house that LOVES to eat, and eat and
eat! It is a battle, like many other battles that I will have to do with
him, but I am sure I will get there.

Daniel's cleft surgery was done at Addenbrookes, by the wonderful Per Hall.
I read as much as I could about the cleft repair and what it would mean for
us, but was unlucky. A short stay of maybe 3-5 days was planned with only
one night in PICU, but in reality, Daniel spent a night in PICU, then back
to the ward, where I spent the night convinced he couldn't breath, which he
couldn't, as his new lovely sewn up palate had made his mouth too small and
his tongue blocked his airway again.! Ahhh, back to PICU for another night,
then to the ward and then home after 11 days in hospital, horrible for me as
my family were so far away and I hadn't be prepared for it not going to
plan. Daniel had the prong in his nose for about a week, and then it was
just put in at night (by me) for about a month. I thought that would be an
end to it, but I am still stuck with it 3 years later!

Gosh reading this back it seems very doom and gloom, but Daniel is a
brilliant little boy, full of smiles, laughter and cheekiness. His talking
was seriously delayed, due to both the Pierre Robin and also having to wear
a brace for his scoliosis and being in and out of hospital so much. BUT, in
the last six months he has started talking so much, it is really, really
fantastic! He is finally saying mummy (it was always daddy for 3 years) and
now he is onto ‘mum'. His voice is so wonderful to hear and well worth the
wait.

Lisa Harvey and Daniel