101221 Romanian human rights defender advocates for children’s lives

Romanian human rights defender advocates for children’s lives

Adriana Tontsch, the president of the Romanian Association for Spina Bifida and Hydrocephalus (ARSBH), advocates for children’s lives. The Association has invested in training doctors and collected contributions from small donors to buy shunts which can prevent the accumulation of fluid in the child’s head. They have now saved over six hundred children with spina bifida who otherwise would have died. She says: “This is a human rights issue – an issue of access to healthcare.”
Adriana’s life story appeared on the United Nations Human Rights website. Click here to read the full article.
Adriana says: “Many children died who could easily have been saved."


101221 First international workshop research in fetal surgery

First international workshop on research in fetal surgery

The first international workshop on research in foetal surgery took place in Milan on Saturday 18 December 2010. New horizons in diagnosis and treatment of congenital malformations were discussed, like artificial placenta, new techniques in back closure in neural tube defects and foetal surgery on several disabilities. Pierre Mertens, IF President, encouraged the scientific world not to give up investing in the unborn child. He stressed that foetal surgery gives hope to parents. Participants from Spain, France, Italy and US confirmed the huge difference in prenatal counseling resulting in termination of pregnancies differing from 30 to 95 %. IF’s position on prenatal counselling was well received.
New horizons and treatment of congenital malformations


101215 Opinion: Compensation because I live

Opinion: Compensation because I live

The Belgian press reported about a lawsuit against the Brussels University Hospital by parents of a child with Sanfilippo Syndrome. The appeals court awarded € 400.000 damages. IF President, Pierre Mertens, wrote an opinion article, "Compensation because I live":
"I understand very well that the parents who filed a lawsuit against the Brussels University Hospital are furious. After the death of their first child with Sanbfilippo Syndrome they dared a new pregnancy be cause prenatal testing was possible. If this test results in a misdiagnosis, their promised termination of the pregnancy will be denied. We lost our eleven year old daughter with Spina Bifida because of a serious medical error. Medical failures are hard to digest.  In our anger, we considered legal action after her death, but chose to grief. In retrospect we are glad we did. The awarded damages cannot replace human suffering. Autopsy and court procedures would have caused more damage than any legal decision in our favor." Read more.

It is shocking that these deep human problems are being fought in court.


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