 Cystic
fibrosis
Mother of three Clare Thomas, whose son Jordan suffers from cystic
fibrosis, says that special children are sent to special parents.
How we found out
Jordan was diagnosed with cystic fibrosis (CF) at five-and-a-half weeks,
after failing to thrive. He had to have three sweat tests (which are used
to diagnose CF as a CF person has much more sodium in their sweat than
normal) because he was such a tiny little scrap by this time, due to his
inability to digest his milk. It was going straight through him by way
of constant dirty nappies which, for two weeks, I was told was 'normal'.
Despite him being my first baby, I KNEW it couldn't be normal to poo that
often and be so constantly hungry! He was also losing weight before our
eyes. He was 6lb 10oz at birth and when he was finally diagnosed, after
the third sweat test, he was just about 6lb - very thin although still
active and alert.
This five week period could have been avoided if CF had been incorporated
into the heel-prick test that babies have, along with hypothyroidism and
PKU. In some areas it is incorporated, but not all. Early diagnosis is
vital as it protects the lungs for longer. Some children CAN digest food
initially and so go a long time undiagnosed. For this reason, I am glad
Jordan suffered from malabsorbtion, because it meant he didn't go for
too long undiagnosed. Once his CF was confirmed he was given pancreatic
enzymes, which do the job his own pancreas can't do, due to sticky mucus
blocking the passage of his own digestive enzymes between the pancreas
and the gut. He gained weight beautifully.
These days, he is on a lot of medication and has treatment for CF. Luckily
he remains largely symptom-free, although this year he has started to
grow a typical CF germ in his lungs, meaning he now has to use a nebuliser
night and morning to deliver an extra antibiotic directly into his lungs.
He is, however, really fit and healthy and a competitive swimmer!
How we, as a family, have coped
Jordan's routine quickly became second nature, as with any CF family
but, to begin with, I had notices posted all over the house to help me
remember his drugs and physio regimes. I was with my first husband then
and it was a big shock to us both. I think a mother often just HAS to
get on with it … his dad seemed to have a bit more trouble accepting it
which may have led to us growing apart (we were both only 20 when Jordan
was born). I did rely on my mum quite a lot in those days for practical
help and support.
These days, Jordan is on up to 50 tablets a day (made up of, primarily,
antibiotics and vitamin supplements) plus the nebuliser and the physio.
Initially, I did the 'back-slapping' thing (postural drainage) but recently
Jordan has been able to take over this himself using a piece of equipment
called a PEP mask, which he breathes into. He has medical check-ups every
other month and an annual full day's 'MOT' in London. So far he has avoided
going into hospital for intravenous antibiotics (a good thing as he hates
needles!) but this remains a worry for us, especially since he started
growing pseudomonas. I live with the worry of the future as the expected
life span of CF sufferers is still only 31 years but I don't dwell on
it. Jordan is fit and healthy and gene therapy is coming ... which may
mean something close to a cure!
The question I had always dreaded
Jordan grew up knowing about CF. We just gradually told him about it
when he asked and he seemed able to take it on board. He didn't really
grasp the seriousness of it until the last couple of years when Alice
Martineau died. She was a singer/ songwriter whose career we had been
following because she had CF. She had just got a six-album record deal
and released her first album when she lost her battle with CF. That's
when Jordan first asked the question I had always dreaded. He said: 'Mum,
Alice was only 30 ... am I going to die at 30?' I acted very casually
and explained that when Alice was born in the 70s they didn't know half
as much then about CF and didn't have such good treatment. As a result,
by the time Alice was Jordan's age, her lungs were already damaged whilst
his - to date - remain very healthy. He seemed fine with this, although
I know he now acknowledges a few things about CF that he hadn't considered
before.
We also have an online friend, Andy, who has CF and is 41. He had a heart
and lung transplant two years ago and Jordan fully understands that, without
that, Andy wouldn't be here. We can't meet up with other CF families because
of the risks of cross-infection. Jordan has known for several years that
he is likely to be infertile (98% of CF males are) and that he will need
'help' to be a dad, either via IVF or through different options such as
adoption.
 Most
importantly, enjoy your child
Initially, it's very important to give yourself time to come to terms
with the fact that the child you planned for - your healthy, 'normal'
child - is not what fate has dealt you. This may take a while but it in
no way reflects your love for your special child; that's a separate thing
and you shouldn't feel guilty for your feelings of disappointment and
grief. In some ways, it really is like a bereavement and you need time
to work through those feelings. (There is poem called Welcome
to Holland which describes this stage SO well.) The next stage is
to arm yourself with info, although this is not everyone's cup of tea,
so go with your own feelings. To me, knowledge is power and the more I
can understand about my children's conditions, the more I feel able to
cope.
Support is also important and it can come from many sources. A supportive
partner is a Godsend but not a necessity, as family and friends are there
for you. Support groups can help too, as can online contacts. The day
I found the Special
Needs forum on babyworld.co.uk was like 'coming home'. I can
honestly say that Tamara, the moderator, gently helped drag me out of
the 'self-pity' stage into acceptance. I sent her many a tortured e-mail
as I tried to sort my head out! She was wonderful!
Most importantly, allow yourself the chance to enjoy your child. If necessary,
throw away the books and leaflets with all those milestone charts - your
child will create his own milestones! And you will appreciate them and
celebrate them SO much more because they have been so hard to come by.
Allow yourself a bit of time to ponder over what might have been now and
again, for as long as you need but not for too long or you might find
yourself missing out on the very special moments that your special child
will keep bringing you, regardless of his disability. Try to believe that
special children are sent to special parents! I can't imagine anyone else
appreciating our boys as we do. There will come a day when you will feel
the same way about yours and be able to offer reassurance to another 'special
mum'. That's a good feeling too.
Where to next?
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