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The power of 13

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A fragile life opens a new dimension to family love

Some months ago one of my daughters-in-law, Tania, announced at the dinner table that she was expecting again, but with a tone that caused me to look up, then to my son, and back and forth. Something was not right. “There is something wrong. They say he has trisomy 13. Do you know much about that?” I am a paediatrician who has specialised in care of very sick babies. I know a lot about trisomies, but how to share that knowledge? With tears, I am afraid.

Trisomy 13 means there are three copies of the 13th largest chromosome in every cell of the body. There should only be two copies. The extra information delivered by the third copy interferes with the development of the baby, particularly the brain. But the face, the heart, the limbs and fingers — almost everything — will be abnormal, and life will be restricted to hours if the baby is born alive. Chromosome 13 is bigger than chromosome 21, whose trisomy results in Down syndrome. The greater the amount of genetic misinformation, the greater the disability. Babies with trisomy 13 are, therefore, much more disabled than those with trisomy 21.

In Tania’s case the diagnosis was made at around 14 weeks of gestation, after it had been suggested by ultrasound abnormalities and confirmed by amniocentesis.…