Genetic Risks: The Implications of Embryo Screening

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When their daughter was still in the hospital, the family signed an advance directive, stating they wanted no emergency intensive care treatment for Anna. They wanted her to die in peace. With this wish, they were abandoned.

It began when the health insurance refused to approve special nursing care for the family. When the caseworker was told the details of the case, she decided that there was "no relevant additional expenditure of time."

The days passed, and the child became weaker and weaker. Her mother never left her alone for a second. "We weren't doing very well for a while," says Sandra Kranz, 28. She turned to a hospice for children. "Zellweger?" an employee asked. "Yes, Zellweger." The hospice agreed to accept the family immediately. But then, once again, the health insurance refused to pay the costs.

Sandra Kranz asked the caseworker on the phone: "Why? My daughter is dying."

The caseworker replied: "The child is too young for a hospice. What do you want to do with the baby there?"

Sandra Kranz was speechless. The hospice filed a complaint and the insurance relented, saying that it would cover the child's stay, but that the parents would have to pay for their own accommodations.

The cost was more than €1,000 a week, more than they could afford. Sandra Kranz works in a bakery, and her husband works in a home-improvement shop. The hospice began collecting donations for the couple.

But by that point Anna was already doing very poorly. One morning the monitoring device wouldn't stop beeping. The oxygen saturation in Anna's blood was declining. Markus Kranz turned off the alarm and woke up his wife.

When the pediatrician arrived, he said: "It won't be much longer." The parents sat down on the sofa, held their daughter and waited until the end.

One out of 100,000 children is born with this syndrome. Sandra Kranz and her husband carry a 25-percent risk of having another child with the same disease. They went to the MGZ last fall. "Anna wouldn't be upset with us for going," says Sandra Kranz.

(*) Names changed by the editors

Translated from the German by Christopher Sultan

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