Australia - Maia Comas, 2, with Rett Syndrome, drowned, 3 Dec 2007

The death of this angel happened on December 3, 2007, a two year old drowned in a back yard wading pool. On first glance it appears to be a tragedy for all concerned, but like many children we have followed - Maia Coral Comas has a story.

Baby Maia had been recently diagnosed with Rett Syndrome, a neurodevelopmental disorder. Infants who appear to be developing normally, at some point between 6 and 18 months development stops - even regresses for most of the children. Heartbreaking for sure.

But Baby Maia's parents have reached a new low on the totem pole of bad parents; according to social workers the parents had made "troubling statements" regarding their child's condition.

During a five-day inquest in January the courts heard Maia's parents, Pablo Comas and Samantha Razniak, had previously inquired about "options", including euthanasia and adoption, before her death. Ms Wordon told the court that during a meeting Mr Comas had said: "I'm 32, she (Ms Razniak) is 28. What do we do with it? It's like a sentence, like we're dead."

Ms Wordon also said Mr Comas had asked why children "with these disabilities" were kept alive. He had said: "It doesn't seem fair on the children."

Samantha Razniak told a social worker she would rather her daughter "die now than die slowly - I don't want to see my daughter become a monster,'' she said.

Ms Element told the inquest that in September 2007 she visited the family to assess whether the girl was at risk.

''Can you help me?'' the mother asked her. ''I want to get an injection to put her to sleep.''

After Ms Element told them about support services and options such as foster care, the couple seemed more positive and felt ''no longer so alone''.

She said the mother told her ''the only way I'm thinking of doing it is through injection, finding a legal way''.

Ms Element did not believe the girl was in immediate danger, but noted the risk of harm could increase as her condition deteriorated.

Here's the deal, Rett Children don't die slowly, they live. It is a developmental disorder. It is not a degenerative disorder.

http://www.rettsyndrome.org/about-rett-syndrome/what-is-rett-syndrome-2.html

When another case worker, Louise Wordon, met the parents in October, the mother said she did not want to keep seeing doctors, therapists and special schools and wanted the girl in foster care ''forever''.

''We love her but we can't live with it,'' the mother said. ''I don't want to see her suffering. I want a normal life.''

On November 22 the mother had also mentioned to The Department of Community Services (DOCS) about committing suicide by jumping off a cliff with Maia. As we often find - mom is still alive, but her disabled daughter is not.

A DOCS manager, Graham Wright, responded but told the inquest he could not recall questioning the mother about those threats. Maia died 11 days later.

NSW Deputy Coroner Scott Mitchell yesterday delivered an opened finding into Maia's death.

While Mr Mitchell said the cause of death was drowning, he was unable to determine if it was accidental or not.

"That the pool was left unfenced, containing water and available to a toddler suggests great irresponsibility on the part of the parents," Mr Mitchell said in his findings handed down at Glebe Coroner's Court.

"The pool in which she died was small, but the water reached up to about knee height, which was more than sufficient to pose a grave danger to her, as her swimming-instructor mother should have realised," he said.

In his findings, Mr Mitchell noted that Ms Razniak, who was a trained swimming instructor, had told police she was too "freaked out" to administer CPR to Maia when she was found in the pool.

In all fairness to the couple their attorney has noted; "The police investigation was very thorough, and the investigative officer came to the point that the death of Maia was an accident, and criminality would not be attributed ... we ask his opinion be taken into account."

The "simple pediatrician" who spent over 2 decades trying to get his peers to recognize the syndrome and spent his life caring for handicapped people summed up this condition best.

In a conference address, Dr. Rett shared his thoughts with parents and professionals. "These three words summarize best our task: To live, to love, and to learn. We are aware of the fact that many mysteries of this syndrome still remain undisclosed, and therefore, for the time being, we have no option but to live with it. However, the children with their very special ways give us enough impulse to share their lives. It is a further mystery of this syndrome that the affected children render it easy for us to love them. A dominating factor in the care of such children is that they understand us and we understand them. Their appearance and the sparkle in their eyes make it easy to love them. Daily care for them and working with them gives us grownups strength, enabling us to learn the special treatment required, thus furthering our own development. To live with them, to love them and to learn from them are the rudimentary principles of our work."

Link to the story:

http://www.dailytelegraph.com.au/news/nsw-act/baby-maia-how-joy-became-shock-and-sorrow/story-e6freuzi-1225992596906