Parents Fight to Take Back Children With Osteogenesis Imperfecta

Six weeks after their daughter was born, a young New Zealand couple had their two children taken away by the state (one was a newborn baby) because of what state officials suspect to be child abuse, and the parents insist is brittle bone disease.

Recently, the Ministry for Vulnerable Children got approval from a Family Court order to take the couple’s second child, an unborn boy who was at risk of harm. The mother, who has asked to be left nameless, was only allowed 4 days with her child for breastfeeding under strict 24-hour security until the state intervened and took him away as well.

Sue O’Callaghan is an advocate for the family who said that the doctors failed to diagnose the first child with a rare genetic condition called osteogenesis imperfecta, otherwise known as brittle bone disease. This disease is characterized by bones that break easily like glass, often from no apparent cause, or even from movements such as coughing. One in every 20,000 babies are born with this disease. To learn more, click here.
The entire situation has been labeled as a serious case of medical negligence on the part of the doctors.

Joris de Bres was former Race Relations Commissioner and has met with the family extensively to detail their medical records. It’s a personal case for Joris because him and his wife have two daughters and a grandson with osteogenesis imperfecta. He’s spent a lot of time with the parents in question and speaks highly of them, saying that he had “absolutely no sense that either of the parents were bad parents.”

Professor Tim Cundy, an expert on the condition said that it’s very easy to confuse child abuse with this brittle bone disease.

In the end it will be a Family Court that will consider the medical evidence and social work assessments to make the final decision as to placing the children in care.

“There is an incident the officials describe as saying the father has a violent tendency because in the middle of things at the hospital, where all this was happening, he went outside and punched a tree and partly injured his hand,” said Joris.

Joris thinks that is normal human behavior considering the stressful circumstances and doesn’t think the father has any violent tendencies. Regardless, that incident will play a role in the final decision.

The young couple are raising money online to cover the legal costs and will continue to fight for their children.

Read the full article in the New Zealand Herald here.


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