(klick on pictures to enlarge)
USA, EI Paso / Texas
We are in the William
Beaumont Army hospital because the labours already started. Actually 3 weeks
too early. However we realize that Steven will be born today. The labours
are getting stronger and suddenly Steven's heart tones cannot be heard any
more. In a rush I`m pushed into the labourward as to carry out a Caesarean
section. Hardly arrived Steven is born in a normal birth anyway.
He is so small (weight 1610 g, 40.5 cm long, head size only 28 cm). Steven`s cry sounds like the miaowing of a little cat. (Yet we don't know that this cry is distinctive for the Cri-du-chat-syndrome (CDC)). I can only have a short look at Steven because immediately he must be provided with oxygen ...and then he is gone at once - to the intensive care unit for newborn childs (NICU).
Steven 3 days old
Steven 2 weeks old
No sign of making up weight. Steven is gaining weight only slowly. He needs an eternity to drink 30 gr from the bottle. Most of the time he is too tired to drink and then he is fed with a probe. Nursing doesn't work as well either.
For "rooming in" I am in the hospital for three days and Steven is at my room. We try nursing him now. However, milk hardly comes. Steven immediately loses weight again. By now he is only crying and I am finished with the nerves. Nursing is simply sensless and from now on he only gets the bottle.
Steven 3 weeks old
Steven is the second night at home now but something is wrong. We drive to the hospital at once. He has herniae at both sides and a piece of intestines jammed into it. Immediately he has an operation. Two hours of scared waiting in front of the operation room, but then we may go to him at once. Everything worked out fine..
Steven is now home for good. However he cries much and sleeps little. A lactose intolerability is diagnosed. His food is now switched to soja base and he is much calmer now.
Steven still doesn't want to grow normally. To definitely find out the reason blood is taken again from him.
This message is so shattering. Now we want to know everything about the syndrome and have found something about CDC (The Journal of Pediatrics, November 1970) in the library of the hospital. Regarding the development of the child the syndrome is described very negatively. It seems that more information doesn't exist here.