A New Zealand couple living in Australia are suing the medical professionals who allegedly failed to identify their daughter's condition in utero. Their daughter Aria, who is now two years old, was diagnosed with Aicardi Syndrome after an MRI scan revealed the condition.
Aria has impaired vision, hearing loss, scoliosis, a dislocated hip and developmental delays. Her parents, Regan Hooker and Wayne Ball, are asking for $2.5 million in damages, stating that had they known about Aria's condition they would have terminated the pregnancy.
As I read the article I winced, thinking about the thought process this couple must have gone through in order to write that statement. Their daughter is two, she is a part of their lives, and they have said they would have aborted her. I winced because I would put money on the fact that writing that down and saying that out loud hurt like hell. I winced because they will receive all levels of condemnation for saying it, from the special needs world and outside it. I winced because I thought and said similar things after my daughter Eva was born with multiple complications and a diagnosis of CHARGE Syndrome.
If I had to guess, I would say this couple is not greedy or callous. They are not trying to hurt their daughter or wish her away. They are living in a country where they do not qualify for government assistance for Aria's treatments. They are saying these things and going to these lengths because the cost of raising a child with special needs and extra medical needs is huge if it is coming out of your own pocket with no support.
It's easy for us to say: "well these parents should come home", and I'm sure they've considered it. But their lives are in Australia, their daughter was born in Australia, she is Australian -- shouldn't she be eligible to receive the same care as her peers? Moving home would mean new jobs, finding a new place to live, uprooting everything.
When my daughter Eva was born, I was aware that her complications could have been picked up in utero. Some of them were -- we knew all along something was wrong with one of her eyes. But many of her complications weren't spotted at all and others, such as her heart and brain abnormalities, were spotted at 24 weeks and then by 35 weeks couldn't be seen anymore. They vanished and she was in the all clear.
After she was born, I asked a doctor about something they had seen before she was born in a scan and he said: "In utero scans are so unreliable. It's like trying to x-ray someone in a swimming pool". The worry and stress those scans put me through when I was pregnant was excruciating and now this medical professional was telling me that even doctors don't trust them?
I knew at that time that when there is malpractice by doctors in a pregnancy or in labour, it changes things dramatically for the family going forward. That family are often eligible for extra funding because the condition is considered an accident.
Because of the lack of information during my own pregnancy, and the ever-changing results which made it impossible for me to make an informed decision, after Eva was born some people, even nurses, suggested I think about doing something similar to what this couple is doing.
I never wanted to do that. I knew this was who Eva was. A traumatic birth had not caused this. Eva was not a product of an accident or error. She was Eva.
I also didn't have the stomach, or heart, to go through with a claim which would require me to state, in the eyes of the law and whoever else was listening, that if I had known everything about Eva's condition before 20 weeks I would have terminated the pregnancy. Because, of course, even if I know it's what I would have done then, it's not how I feel now.
Having as much information available to you through pregnancy is so important if that's what you want. Having the right to make a decision based on that information is so important. Knowing that this is your decision based on what you believe is right for you and your family, is so important.
But like the doctor told me, these scans are imperfect so you aren't always going to have the right information. And if you don't get the right information and so you don't get that choice, what is also important is knowing that the costs of raising this child -- whether that the emotional, financial, or mental costs -- are not so steep that this becomes a life to be avoided.
If Regan and Wayne were getting the support they need, clearly desperately, they would not be suing. If raising their daughter was not placing such a huge financial toll on them they would not need to resort to this action. If raising a special-needs child was not such a tough way of life and a challenge, perhaps they would have gone through with the pregnancy even if they had had all the right information.
I'm not judging their decision to sue. I'm not judging the decisions they didn't get to make, or the one they say they would have. Because they are making their decisions, both now and then, in a world that doesn't make it easy for a family raising a child with special needs. Their decisions at 20 weeks of pregnancy were looking forward to a world where they knew some of the costs, albeit without all of the love, of this life. Their decisions now are based around trying their best to cope with a life that isn't supported by the community they live in.
Let's not judge them and condemn them. Let's judge and condemn the community and society and laws which meant they had to go to such extreme measures to take care of their daughter. It shouldn't be that hard.