Eli: new baby, new diagnosis – some
tips
If your baby has just been diagnosed with CAH, take
heart! When our baby son Eli was diagnosed we were shocked but grateful,
because at least then we knew what was making him so ill, and it could be
treated. It is such a traumatic time for parents, as we know only too well.
Here, in no particular order, are a few suggestions that are still fresh in our
minds and may help you:
- Things
will start to feel better
very quickly for you as a parent. Honestly! Right now you are as exhausted as
you can be with the rigours of looking after your new baby, and suddenly you
also have to confront this diagnosis and deal with the fear and the medicines.
The treatment soon gets less complex, and you find it all much easier after a
while, as you become used to it and learn more about the condition.
- You can’t learn it all at once!
You want to know more and more while taking in less and less.
Concentrate on the daily
treatment; the rest will fall into place soon enough. The CAH Support
Group website is a marvellous resource, and it will still be there next
week/month, when you are a bit more relaxed. Defer any big decisions. You will
realise that it is a rare condition, so unless they specialise in it, doctors
and nurses may not know all the
answers.
- As with any subject, an Internet
search for CAH will throw up a plethora of misleading, incorrect, hard to
understand and outdated “information”, which in this case can be
intimidating or even frightening. Studies can refer to symptoms seen only in
undiagnosed or untreated CAH, or a different type of the condition. Publication
of bona fide medical/statistical data is infrequent because of the rarity of
the condition, meaning the data that is available can be dated, while the
treatment is quite new and modern. Unless you are very hardy, I would advise
that you stick to the links on the CAH Support Group website for
now.
- Write down questions as they occur to
you. This crystallises your thinking, and having a list will make those brief
consultations with your doctor/endocrinologist more productive and
reassuring.
- Be prepared to feel a little guilty.
It is completely irrational, but you are tired and emotional. You may feel that
you are in some way responsible, which is simply untrue, or that there was
something more you could have done. Recognise the wrong-headedness and try to
leave this negativity behind.
- Work out an abbreviated description of
the condition, so that you don’t get tongue-tied at social occasions. If
someone wants the whole story, they’ll ask.
- Know in advance that people may rattle
you unintentionally: comments like “Oh, so it’s nothing
serious…” or “There are plenty of children worse off…”
etc. etc. Comments of this kind are usually meant as a comfort, and may well
have some element of truth in them, but they don’t recognise all that you
are going through. Try to let it pass without getting upset.
- Join the CAH Support Group and get the
big information folder. Most importantly, remember that
you are not on your own, and
ask for support or just some contact as you wish. You will be reassured when
you see others with CAH, and talk to their parents.
- Don’t expect that knot of worry
to disappear instantly, as soon as baby gets home. It dissipates slowly over
months, and will reappear briefly every time baby gets any of the maladies of
every normal child. You WILL worry every time treatment is assessed and weight
& height is measured, and you WILL question whether “x, y &
z” are “normal” (probably!) or due to CAH. It does get easier
though, and once you have got over the first minor illness, you can fall into
the comfort of routine. You worry, but your child won’t!
- Genetics is not the hard and fast
science we in our family imagined. Tests can be slow and painstaking needle
hunts in the haystack of DNA. They can take months (and months!) and can come
back inconclusive. Be realistic in your expectations.
- Try to get the telephone number of the
doctor treating your child’s CAH, or a contact name & number at the
unit or clinic that you attend. If you have a question about symptoms or
treatment, or if something is bothering you at any stage, then you can
telephone and get an informed opinion (they’ll probably have to ring you
back). This means that you don’t panic, or worry about it for weeks until
your next appointment. It is also a good idea to forewarn your G.P. that your
child has CAH.
- Don’t be afraid to give the extra
(in our case threefold) dose when you feel it is needed –
the first time we gave it to Eli we waited until we were sure it was really
necessary. When we saw him quickly perk up and gradually get rid of his fever,
we realised we should have given it earlier. The next time we got it just
right. You’ll soon get to know the signs.
The most important thing of all is to realise that
a child being treated for CAH is a happy and healthy
child, and should not be restricted or limited by the condition.
Certainly it is an inconvenience, and each child will have his/her own bridges
to cross, some more serious than others, but the stress of those first few
weeks after diagnosis is surely the worst for a parent. Add into the mix that
as baby’s levels settle, there may be more tests and treatment changes in
the first few weeks than at any other stage of life.
We were horribly shocked by the whole experience of
seeing our ten-day-old son in the incubator while the doctors raced to find out
what was wrong. Then the worry of CAH – what was that? There were early
complications and it took a while for all the treatment and levels to settle
down, but after the first few months we started to relax. We don’t focus
much on his CAH any more. He hasn’t a care in the world, and probably will
never be as concerned about any of this as his parents are…
:p>
Eli's Dad
8th August 2001
P.S.: We’re not experts; we only have one baby boy
with CAH. If your experience has been different, or if there were something you
would like to add or comment on, you might like to post any information you
consider helpful on the message board.:p>
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