A fabulous site of games where you explore a world and earn points
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takes centre stage.
hardly seems to be anyone I know who hasn't been through some
awful experience with their child and I am fortunate enough
now to be able to look at the last three years with the knowledge
that it could have been worse and that while things have been
hard, many people have it far worse.
didn't feel much like that though when, after a long labour
and an eventual emergency c-section, the operating theatre went
totally silent. I was exhausted, I saw the registrars look quickly
at one another but I just closed my eyes and dozed. They told
me I had a girl and whisked her from the room. I vaguely remember
realizing that something wasn't right. A few minutes later they
called M (my husband) out of the room and when he returned with
the midwife, who carried a small wrapped up bundle, he looked
utterly shell-shocked, though that could have been witnessing
the previous 15 hours.
got a little problem with her mouth. A cleft lip and palate.
Do you want to look at her?" asked the midwife. Errr...well,
yes, of course I do. They had covered her mouth with a blanket
but I pulled it back and thought she looked beautiful. She had
the most amazing eyes and somehow, her mouth seemed as if it
should be the way it was, her lip separated by a gap of nearly
an inch that extended up into her nose and gave her just one
nostril, the other being stretched to the corner of her mouth.
I know people who have screamed and sobbed at the sight of their
cleft baby but not me. I felt as if I had known all along.
and First Hours
the week before Frances was born I began to obsess that the
baby would have a birthmark on its face. In the early months
of pregnancy I would catch sight of babies in prams and it would
flash into my head "Why can't I have one like that."
I never really felt secure that everything was okay. So it wasn't
a big surprise, though when the morphine and the anaesthetic
wore off, I was certainly shocked and cried buckets for days,
weeks, months... a year.
worst thing about having a baby with a facial deformity is that,
well meaning as it is, you get instantly bombarded with photos
of babies who have been repaired and I tried to be positive
but none of them looked that great to me. I'm a reader, I like
to know exactly what I am dealing with. Folders full of literature
came my way and instead of bonding with Fran, I sat and read
about related syndromes (and panicked), breathing problems,
dental surgery, endless surgery, speech problems, hearing difficulties,
braces, bone implants, recurring clefts with future babies...
(very rare but statistics are a bit unimpressive when your baby
has just become the 1 in 700 with a cleft). No fun.
Our speech therapist arrived with squeezable bottles, rosti
bottles (funny shovels to get milk into a baby who can't suck)
and lots of reassurance to get us through the first few days.
My mum was earth-shatteringly brave, cried in the car park and
fought the urge to send her daughter out of the room while she,
the real grown up, got down to business with the professionals
(dear old mum! I'm still her baby!) Midwives offered to look
after Frances, I let them, forgot to express, grieved over not
breastfeeding - and boy did we try - sobbed a bit more in private,
wondered whether M who had gone home, exhausted, for a shower
and food would actually come back (he did, of course, having
got home and wondered why he had left!)
of looking at Frances, I looked at other photos of other children;
people tiptoed in and out and muttered about how calm I seemed
(HA!), Frances screamed with hunger until daddy arrived and
read her a Narnia story, I started to go quietly balmy. All
I had ever wanted was a baby, but this was not what I had expected.
On Bank Holiday Monday, her surgeon, Mr Hall arrived having
heard about us by accident, left his family on his day off to
visit and talk us through her first operation. I got my first
real lesson in parenting from this man. I wanted her lip fixed
before our wedding which was in six weeks and tried to be brave
about him saying it was too wide a cleft to guarantee to fix
well at that stage . He saw how upset I was and said "It's
what is best for Frances that is important now." I will
never forget that. However he decided to do a partial fix and
actually did her complete lip at 10 days.
on with it
had 4 days at home between hospitals (Peterborough and Addenbrookes)
which were frankly hell. She had jaundice because I didn't realize
that babies were supposed to drink more than 40mls of milk a
day (!), she screamed incessantly (hunger?!) we ate burnt food,
I cried, M coped, we had up to 14 visitors a day (ARGH! Why
do people let this happen to them!), it was horrid. In very
bad moments, I hoped we wouldn't be bringing her back from the
hospital. (I only write this in case someone is reading this
in those mid few days. If you are thinking it, you are not a
mad cruel heartless woman, you are in shock.)
Stitched - 11 days old
arrived at hospital on Monday for an operation on Wednesday.
They took her into special care on the Tuesday night, I climbed
into bed and prayed to wake up in three years time. At 6.30am
they woke us up to say goodbye to her - she was already in the
travelling incubator, screaming and I couldn't give her a goodbye
cuddle. It was possibly the worst moment of my life. We waited
for hours; the message to say she was back got lost and for
two hours I assumed she was dead and that no-one dared tell
us. Eventually I plucked up the courage to ask, ran to the ward
and couldn't recognize my baby, who was 4 times the size of
most of the others in Special Care and straight in front of
me. She had been transformed into a baby with a proper face
and even with her Tabitha Twitchitt whiskers, she was absolutely
beautiful. It just shows you how much we adults milk pain -
she had 2mls of Calpol 3 times a day for less than a week and
came on in leaps and bounds. The most amazing thing was the
absolute humility of her surgeon, who crept into the ward and
asked us if we were sure we were happy with what he had done?
Number 2 came at 9 months - I found it very hard - I was in
the grip of postnatal depression but keeping it beautifully
hidden, having nightmares every night and barely able to function.
We had bonded - I thought she would die because the previous
time I had almost wanted her to. We made it through; she was
supposed to cried for 3 or 4 days but only cried for 3 or 4
hours and stopped once we fed her! By Operation Number 3 I had
had counselling, I was pregnant again and this time it was M
who found the long hours of waiting in the cafeteria incredibly
hard. She was fine but didn't react so well to the anaesthetic,
got a temperature, had to go back on a drip and frightened the
life out of me. Then, the night before we had hoped to leave
the hospital, I got food poisoning, was sent to A&E for
the night and started having contractions - which luckily stopped
again! M busted us all out two days later having been treated
like an incompetent moron by a nurse who thought daddy couldn't
look after his little girl without a thorough patronizing! These
operations seemed much worse and involved blood oozing out of
her mouth, weaning her off her dummy (YEH!) and soft food for
three weeks. Boy, was she sick of Weetabix.
months - my angel
with a cleft
you can see from her photos, Frances has been really lucky -
she is beautiful. To be honest though, how she looks stopped
being important fairly early on. Her hearing was awful so she
had to have grommets, which work like magic, her speech was
seriously delayed and is still difficult to understand. She
is missing several sounds, including b, p, l, n, d, v and to
a certain extent f. However, these are improving. Until her
cleft palate was repaired in the 2nd and 3rd operation, she
used to get things like chips stuck in the cleft and on one
occasion we had to go to casualty to get a plastic clothing
tag removed that she had put into her mouth and then twisted
so the T top had wedged. I am eternally glad I was not there
the time she put a coat hanger hook in her mouth and it came
out her nose! Well done M for staying calm! She still has a
gap in her gum that will not be repaired until all her adult
teeth have come through and she has a tooth that grows through
the roof of her mouth. But she is happy and growing in confidence
and capability. I am determined to home educate her because
I don't want her to be bullied or become over aware of her difficulties
until she is in control of them. I am so proud of her and of
all of us for coping as well as we have with it.
Pooh Bear Girl aged 3
is now nearly 5, the eldest of three girls (no other clefts)
and faces her 5th operation in April. She is a wonderful, bright,
laughing and beautiful girl. (She has off days too!) She knows
about and understands her cleft, which she calls her gap and
is able to field some of the questions people ask alone. She
gets a little confused because people, not noticing her lip
repair, assume she has lost a baby tooth and ask about it and
she isn't sure how to explain. But she is confident about asking
us things she needs to know (why, how etc) and we have promised
her surgeon will tell her more when she next sees him. Her hearing
is currently a little down again but she copes well. Her speech
is not perfect and still has some sounds missing, but mainly
on old, long ago learned words, but she is perfectly intelligible.
She loves to skate,dress up, socialize, read... and all my fears
and anxieties have so far proved groundless - so either we did
an amazing job or it really wasn't such a big hill to climb
after all. And as you can see below - she is still totally beautiful.
below right,with her sisters Maddy (top )and baby Amelie
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