2012

(klick on pictures to enlarge)

Steven`s Diary

USA, EI Paso / Texas

Saturday, October 26th 1985

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


I am discharged from the hospital. Steven has to stay. Because he cannot keep his body temperature he further is kept in an incubator at the NICU. We may come at any time to visit and are allowed to feed him, change his diapers and take him out of the incubator or give him things like musical box, teddy bear etc.

 

Steven 2 weeks old


Somehow Steven doesn't look like the other premature babies at the NICU. All of them look very wrinkled ... Steven does more look like a normally born baby with quite smooth skin, just much smaller. The doctors assume now that his smaller size is because the umbilical cord did not have 3 but only 2 vessels and thus the fetus was underserved. During the pregnancy the calculated date of birth was "corrected" repeatedly due to the ultrasound examinations (because of his smaller size). He wasn't early by 3 weeks at all, but in time. The doctors encourage us: soon he will have made up the weight and will then develop normally.

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.

2 1/2 weeks later

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 weighs now 1800 g. He has gained only 200 g within the last 3 weeks. Nevertheless, because he can keep his body temperature now, we got him home the day before yesterday with the comment: "Your baby is O.K. now ". Still we don`t know anything about his handicap. Steven is still a tiny baby. We really don`t notice it. It is our first child and ... the umbilical cord!

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..

4 weeks later

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.

6 weeks later

Steven still doesn't want to grow normally. To definitely find out the reason blood is taken again from him.

December, 19.th 1985

Today they told us that Steven has Chri-Du-Chat-Syndrome.

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.