Russell-Silver syndrome
It’s my first pregnancy, everything’s going well, I’m not feeling unwell, I’m not putting on much weight, everything’s perfect. The delivery also went well, with no pain thanks to the epidural at 38 and a half weeks. Our lives changed the second Alec was born. We knew right away that something was up. A tiny baby weighing barely 2 kg was given to us, but very tall at 48 cm. This made him a very skinny child with a triangular face. A few seconds later, my last contraction produces the smallest placenta that Dr. B. has ever seen. the size of an orange.
After 9 days in hospital, they let us go with a little baby who had the minimum weight for discharge, but also a heart murmur and immature genitalia. This is followed by regular visits to the doctor, lots of tests and a lot of misunderstanding. Alec drinks only 2 to 3 ounces of milk and eats very little. He’s not gaining enough weight, but he’s developing normally for his age. A charismatic little fellow who attracts everyone’s attention with his surprising alertness and small size. The discrepancy with the growth charts became more and more apparent, and at 13 months, when he weighed only 12 pounds, we were told of Silver-Russell syndrome. The doctors decided to force-feed him through a nasogastric tube. The trial works, but rather timidly.
Since then, we’ve been learning to live day by day with all that this syndrome implies: medical care, surgery, hospitalization, force-feeding, difference… We live one day at a time. However, since we’ve come to know people who live the same everyday life as we do, it’s a lot easier. When we have questions or concerns, we communicate with each other to get answers. This new knowledge helps us enormously. Without them, we’d probably still be in the doldrums, because it’s really these parents who help us the most in all our trials.
Stéphanie, mother of Alec, born in 2009