Support, Research and Advocacy for Rare and Special Families

MWS Stories

Holland > Timo

© Mowat-Wilson Syndrome Foundation

© Mowat-Wilson Syndrome Foundation

On March the 3rd Timo was born, and this is where our story begins.

Timo was born when he was only 26 weeks and 2 days old, in the Wilhelmina Children’s Hospital in Utrecht. The day began with “the baby is very active inside” and it ended with sirens blaring to Utrecht. Unannounced and way too early, yet very welcome, Timo was born at 6:40 am. During the birth we had to decide on the actual name.  Fortunately we had a top 3 list with the name Timo at the top. Timo means ‘to be proud of’ and yes, he really makes us very proud!

After 6 hours of contractions with complete dilation, and eventually a Caesarean section at the intensive care unit, he had to stay there for 2 months. Timo looked bluish and was fragile, a tiny little chick. Infusions and all kinds of instruments and medication helped him further. Timo was a brave little boy, he was very active in his incubator. Unfortunately, he got two infections in between and he needed surgery on his heart. A clip had to be attached to close his ductus arteriosus so that the blood supply could increase. Due to these complications it took a long time before we could move to the high care. Timo finally arrived here after two months. After a few weeks at the high care unit we could move to the Deventer Hospital, in the city where we live. Timo has significant lung damage and needs supplemental oxygen. This is why we could only go home at the end of June. We have so many oxygen bottles at home, we could start a diving school.

Meanwhile, all sorts of medical examinations take place: Timo has hypospadias (his urethra is below the normal place); his heart is enlarged; kidney problems; hearing tests; eye tests; brain scans etc… The conclusion is that Timo has a few permanent abnormalities, while some other abnormalities are a result of premature birth and will disappear. Therefore genetic research needs to be done. In addition to his physical abnormalities Timo also has a few external characteristics: a pronounced chin (well, mommy also has a chin like that) and eyes standing far apart (we thought it was due to his Indonesian roots) and curved earlobes (sweet isn’t it, those ‘shrimp cracker-ears’?).

Many physical abnormalities disappear, only his hypospadias and external characteristics remain. So we don’t think of a syndrome. Until the day August 27th, in a quiet and sterile room, we are being told that Timo is suffering from the Mowat-Wilson syndrome.  Together with only 150 people in the world, how is it possible…? We say goodbye to our expectations and some dreams (that’s why it is called mourning …). Nevertheless other thoughts appear, we look at Timo’s possibilities, we enjoy him and he will show us the way.

Timo is and will always remain our little miracle.

Head in the clouds, feet on the ground

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