Name: Eva
Gender: female
Age: 2 years
Country: Belgium

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.
One 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.
In 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.

Only 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! ;-)
The nurses are always super friendly and they brought Eva a present for her first birthday and sang her a song! She looooved that! :-)

The 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.
To 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 that! ;-)

Maybe 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!
She 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 will have to go to school. This is probably going to be an other stressy period. We'll just have to wait and see!

This page was last modified on 28 February 2011