Stephan and I had just moved to London from Switzerland when Cecil, our first child, was born seven weeks early on January 15, 1998 weighing just over 3lbs. Cecil did brilliantly in his first week of life. He was still in hospital of course, but came along really well. After that, a very tough time started for all of us.
First of all Cecil’s tummy began to blow up like a balloon and he was obviously in a lot of pain. The doctors stopped the milk feeds, but the X-rays taken didn’t reveal a reason for what might have been the problem. After two weeks of worrying and yet another, more sophisticated examination, the solution was found: Cecil had a malrotated (twisted) stomach and had to undergo surgery. On one hand we were happy to know the reason for his misery, on the other hand we were scared about the operation, even though the doctors told us it was just a routine procedure – Cecil was still so tiny! The operation went extremely well, Cecil was a different baby after it and recovered very quickly. We were delighted – unfortunately not for long…
When Cecil was a month old, the doctors told us about his chromosome problem. They had routinely taken a blood test, because they thought Cecil’s ears were low set and also because he was very floppy at birth. We didn’t really know what all that meant, the Down Syndrome was the ‘only’ thing we associated with a chromosome disorder.
After we had seen a geneticist things weren’t much clearer. We were told that Cecil is expected to have ‘general learning difficulties’ – other than that, it will be a wait-and-see-situation, partly because this is such a rare condition. The sadness we experienced in that particular moment I can’t explain, it was devastating and we felt pretty helpless. At the same time we also had our chromosomes analysed and it was detected that I am carrying a balanced translocation being the cause for Cecil's abnormality.
However, we learnt that Cecil is our very own, gorgeous, little baby boy - no matter what. At the moment it is sometimes hard to believe that anything could be wrong with him at all. O.k., Cecil might be a little slower in his development than other kids, but then every child has its own pace anyway and Cecil was also premature. He is doing so well just now, it’s a pleasure to watch him grow. Let’s keep our fingers crossed! At Cecil's eight months birthday he was just over 14lbs and is still very small. He is generally a very happy baby who rarely cries, he loves to smile instead and makes all sort of noises. These days it seems to give him a particular joy to sit upright with a little support from somebody. Cecil is being seen regularly by his physiotherapist who helps him (and us) to make the most of his abilities. He is also seen by a speechtherapist, because we were concerned about his protruding tongue.
We are a happy family at the moment and we feel fortunate and proud to have Cecil, we love him to bits and pieces! At the same time we are very anxious about the time lying ahead of us. We would love to have more children, but since Cecil has inherited his condition, it is not such an easy decision anymore…. We will keep you up to date on what is happening. In the meantime we wish everybody a lot of energy and joy for all those challenging moments you have to cope with.
--- Sandra & Stephan
|Name||Cecil Stephan Keiser|
|Birth Date||Jan 1998|
Cecil's diagnosis: |
46, XY, der(11)t(10;11)(q25.2;q25)
because of inherited maternal balanced translocation:
46, XX, t(10;11)(q25.2;q25)
|Parents||Sandra Disteli & Stephan Keiser|
|sandra[at]keiser-disteli.ch (change [at] to "@")|
|Cecil - About 8 months||Stephen, Sandra, Cecil, Dennis (2002)|
Marla, Stephan, Dennis, Sandra, Cecil (2005)