Age: 2 years
Eva was born two years ago, after 48
hours of labour and an emergency
c-section. Ik had doubted about trying to breastfeed her, and in the
end decided to give it a try. Unfortunately that wasn't working out too
well, I was so tired after giving birth. After 2 days I decided to
switch to formula. That turned out to be a good idea afterwards!
Just like all newborns in
Belgium Eva was screened on a number of inherited diseases among
which MCAD deficiency.
week after Eva was born, we
got a phone call from the hospital to say that some anomaly was found
and if we could come by the next day at 9 o'clock?
I don't have to tell you
that at such a moment your world collapses...
On the phone the doctor had
given some kind of
explanation, but I honestly couldn't remember anything. Of course you
start surfing the internet and think that it is probably PKU or
something because that's what you get the most information about.
The next day we were
explained what was wrong with our little girl: MCAD deficiency.
the center of metabolic diseases we were well received and we were
given a lot of information and emailaddresses and phone numbers, and
the message to contact them for any question we might have.
But it was still a tough
one to swallow this kind of news...
The first 6 weeks were
relatively normal. We were
told not to let Eva fast for more than 3 or 4 hours in between meals,
so at night I had 3 different alarm clocks to make sure that I would
wake up in time.
After 6 weeks Eva
suddenly stopped eating. She
completely refused to drink. So we rushed to the hospital where she was
given a nasogastric tube. They thought it might have been a small virus
or so and that she would soon start to eat again.
Unfortunately Eva knows
very well what she wants and especially what she doesn't want. And she
didn't want to eat.
After some more
examinations Eva was found to suffer from reflux and must have made
bad associations with food.
First she was put on
Motilium and Zantac, soon after on Prepulsid and Omeprazole.
We ended up staying in the hospital for 4
weeks. But she still didn't eat.
We were send home with the
nasogastric tube and the pump and instructions on how to use it.
After 3 months Eva still
didn't show any interest in eating. On top of that she
started to vomit every morning feeding, after she received her daily
dosis of Omeprazole. This was not a coincidence as it turned out,
because when we got back to Zantac in stead of Omeprazole, she stopped
vomiting. And eventually she got some interest in eating.
It was still a long
way to go. She hasn't been
drinking from a bottle since she was 6 weeks old until today. She
started with some minor successes around vegetable and potato mix.
Fruit was stil a big NO.
when she was 10 months old, and with a lot of help from the speech
therapists and the psychologist, Eva would eat enough vegetables and
fruits. But for her
milk she was still dependent on her nasogastric tube.
I stayed home from work for
7 months in that period, because I really couldn't send her to a day
care center like that.
After some more experiments we learned that
she would eat her milk with a spoon after it was thickened with cereals
from Nestle. When she was one year old, she would also eat enough of
this in the evening. So the nasogastric tube was only for the nightly
feeding and breakfast.
Eva spent her
first birthday in the hospital where she was admitted for a glucose
drip. She had a viral infection causing her to vomit. In her first year
she was admitted in the hospital 4 times for this kind of treatment.
Each time we got to
the hospital in time, so she never decompensated.
Thanks to the excellent care that
was given her
in the hospital, these admissions always were as pleasant as they could
be (or at least after we managed to get through the ER!) and I don't
think Eva did mind that she had to stay there. She did of course get
a lot of attention from mum and dad too! ;-)
nurses are always super friendly and they brought Eva a present for
her first birthday and sang her a song! She looooved that! :-)
nasogastric tube was still in place for the nightly feeding.
Fortunately she did only pull it out once every two weeks or so and
never on purpose. Every six weeks it had to be replaced.
avoid having to go to the ER also for this, I learned how to put a
nasogastric tube in place. I practiced a few times in the hospital and
very soon after I managed to do this on my own. So now it didn't really
matter so much if she pulled it out in the middle of the night, and
that was a lot less stressy for us!
At the age of 18 months we could gradually stop
with the nightly
feeding. We had to add some corn starch (Maizena) in her evening meal
to help her through the night.
I measured her blood sugar
each morning and it was always around 80 which is perfect.
In the mean time we let her
sleep for 11 hours and everything goes fine!
So she is also finally
relieved of that horrific nasogastric tube, after 16,5 months non stop!
I am very happy that she
doesn't have any scarring on her face from the bandaids that we had to
use to keep the tube in place.
After all her issues with
food, I can now
say that Eva eats very well. She always eats enough and never skips a
meal. Not that she has the choice or anything, we are very strict about
the worst is yet to come of course. She is now amost two years, and
everything I ask is answered with "NO". Or lately a little bit more
politely "no, mama" ;-)
Otherwise Eva is a super
happy child! Aways smiling and always in a very good mood!
is very active, loves to dance (on Bon Jovi!), prefers felt-tip pens
over crayons (they make more of a mess! ;-)), is very social and loves
going to the day care center to play with her friends.
It is still not easy for me
to leave her in the day care center while I
go to work. Both me and my husband are back to work full
time. But we are very lucky to have found a great day care center where
they take excellent care of her. They know what to look out for and
they are instructed to call me for the littlest thing that is not
normal, which they dutifully do. That is quite a relief!
Only a little while and Eva
to go to school. This is probably going to be an other stressy period.
We'll just have to wait and see!