Saturday, May 27, 2017

Our Aloïs...

by Nicky Van Renterghem, Lochristi (Belgium)  

He was born on 14 Ooctober 2015, a day we looked forward to for a long time. Everything was well prepared. The delivery was planned on that day because of toxemia in my pregnancy. “We take no risks,” said the gynaecologist, “especially because of your age (40).” 

After a very easy delivery, a tiny, fragile baby came to our world. He almost didn’t move, compared with what I felt before in my belly. In my hospital room the nurse tried to start breastfeeding but Aloïs didn’t have any idea of what he had to do. “He still needs to recover from the delivery,” we thought. Later on, because he couldn’t drink at all, they decided to give him a gastro tube so that he could have the necessary nourishment. Because his temperature was far too low, they put him in an incubator.

Away dream, away baby, bye bye breastfeeding!

I started to pump milk so that they could give him the best food.  Nobody knew what was going on. The paediatrician searched every day as to why Aloïs couldn’t drink independently. Five days later our sweet little boy got transferred to the neonate intensive care unit of the university hospital in Gent; a very specialised unit! I arrived there, barely recovered from the delivery, in a unit where there are 3 wards with about 10 babies in each. Next to each incubator stood one chair. You didn’t need to expect any privacy! 

Thousands of questions and a lot of worries haunted through our heads!

There I stood, crying, close to my son in his incubator, not knowing what was wrong with him, realizing that our “dream” looked very different to what we imagined. Great respect for the doctors and the nurses. They did everything possible to help our baby and to allowing us to be involved with our baby's care.   They listened to us endlessly. 

A long period of iucertainty and examinations started. Every day we arrived at the hospital with that little hope they finally found the cause of Aloïs' problems. Every day we prepared ourselves for when they couldn’t give us the right answer. Meanwhile, we tried to enjoy our little darling who recognized the smell and sound of our voices voice while in the womb. That intensive bodily contact was really marvellous! My husband and I took turns in those wonderful moments. We couldn’t do more at that time.

After 3 weeks, we got the long awaited answer. Aloïs was diagnosed PWS. 

PW what???? Never heard about it! 

This syndrome seemed to be very rare. We started searching on the internet – the worst decision ever. Total panic at home! What does PWS mean for our family, our jobs, our life? How will his sister, our parents, our surroundings deal with it? And above all, what does it mean for Aloïs? We had appointments with several doctors: endocrinologist, gastro-paediatrician, physiotherapist, paediatrician, geneticist,…. we got a lot of information to cope with.  We understood: "your little boy will be different, your future life will be otherwise than expected and planned." 

Could we handle this? What did it all really mean? What will be the impact on our lives? We had a roller coaster of emotions, went from one doctor to another and realised: this will remain for the coming weeks, months, years!

Once we had accepted this reality,  the time came to enjoy our child. And we did it a lot! And still do! Every day we’re surprised and amazed about what our son can do. What willpower he has! Remarkable and admirable! 

We’ve adapted our life to Aloïs. Everything is well organised, planned and structured. We have a lot more hug times and enjoy them.  Our patience is sometimes put to the test, the combination work/family is not always simple but we are oh so enriched in our lives by this. Once in a while we get out of our emotional roller coaster of life to consciously dwell on 'today' and that feels good. 

Aloïs is now 1,5 year old and he can walk holding our hands. Sometimes he babbles for half an hour -  a completely incomprehensible story!  He knows exactly what he wants and doesn’t want. Every evening he gives his sister the hug of her life when she comes home from school.  He is our cuddler!  We still go twice a week to the physiotherapist and recently we go to the pool for water therapy which he adores. His weight and height are good, thanks to GH.   

We’re convinced that we get to where we want to be with the help of a lot of love, patience and understanding and we do that in our own way.


  1. My grandson also has PWS and lives in Flanders, not far from Aloïs. He is almost 5 years old and is developping his own personality. Very strong in solving puzzles and clever in his way. He needs more care than other children but enjoys life. To the parents of Aloïs: your child will develop himself in his own way, it will not be easy, but you will be proud of his achievements.

    1. How lovely that you live nearby! I wonder if the families are aware of that? You are so correct in your observations! Thank you.

  2. At the events organised by the PW Flanders Organisation, we get to know other families who live nearby.
    It's reassuring that you can ask some advice to other families who understand you!
    @Herman: indeed we are very proud of everything Aloïs already can do!