For Tessa Prebble, whose own daughter was born with congenital issues, the story of Aria evokes only sadness – and anger at a medical system that let a struggling family down.
Tessa Prebble is a force. She writes with great courage and she’s changing the world. Here she shares her views on a heartbreaking story that hasn’t been treated as sensitively as it could be in the media. We won’t deal in gut and knee jerk reactions here at The Spinoff Parents. Nuance in pain and tragedy, the real honest truth – you’ll find it here. Thank you Tessa for sharing with us – Emily Writes, Spinoff Parents editor.
A New Zealand couple living in Australia are suing the medical professionals who allegedly failed to identify the condition for $2.5 million in damages. Their daughter, Aria, who is now two years old was diagnosed with Aicardi Syndrome after an MRI scan revealed the condition. She has impaired vision, hearing loss, scoliosis, a dislocated hip and developmental delays.
Aria’s 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, imagining the struggles 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.
I winced because 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 Australia 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.
My daughter Eva did not live to turn one year old, but in her short life we must have spent tens of thousands of dollars of tax payer money on her medical treatment. If she had lived long enough to have her two cochlear implants, that number would have easily exceeded the hundreds of thousands. I live in New Zealand where her health care was covered under the public system (keep your hands off it, National) but if I lived in Australia, as a New Zealand citizen, all those MRI scans and hospital stays, therapies and doctor visits would have started to form an insurmountable debt.
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 there; she is Australian, shouldn’t she be eligible to receive the same care as her peers?
When 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 then many of her complications weren’t spotted at all and others, like her heart and brain abnormalities, were spotted at 24 weeks and then by 35 weeks they 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 in a scan before she was born. “In utero scans are so unreliable,” he said. “It’s like trying to x-ray someone in a swimming pool.”
I almost choked. The worry and stress those scans put me through when I was pregnant was excruciating and now this doctor was telling me they were a flimsy representation of reality? That even doctors don’t trust them? Why had I put so much faith into something even medical professionals dismiss as a guessing game?
I knew then that when there is malpractice by doctors in a pregnancy or in labour, it changes things dramatically for the family going forward. Those families are sometimes eligible for funding through ACC – funding that is not available to those children with congenital conditions.
Because of the lack of information during my pregnancy and the ever-changing results which made it impossible for me to make an informed decision, some people – even nurses – suggested I think about doing something similar to Aria’s parents. They suggested I claim malpractice in order to gain funding through ACC. I would not be suing for $2.5 million of course, but I would be saying that because the doctors could not diagnose Eva’s condition when I was pregnant, I had gone through with a pregnancy I might otherwise have not.
I never wanted to do that. I trusted my obstetrician and I thought she had done the best that she could. She sat with me while I cried through so many meetings. She held my hand through scans and once held a bucket for me while I vomited after lying on my back too long. She hugged me when at 35 weeks it looked like the only thing to worry about was Eva’s eye.
I also 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. Her genetics were perfectly hers, although impossible to pick up in any scan.
I’m not saying that there’s no such thing as medical malpractice, or that I wouldn’t have followed through if I felt that was what had happened in my case. But I didn’t feel that was what happened to me.
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.
I also lived in a country where so much of Eva’s medical care would be taken care of. While I knew there would be financial costs because of Eva’s condition, particularly through loss of work, I also knew I wouldn’t have to set up a GoFundMe page just to get her basic medical needs met. I wasn’t in the desperate situation these parents are in because I had a level of support in place.
Having as much information as possible 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 don’t get that choice, what is also important is knowing that the costs of raising this child – whether they be emotional, financial, or mental – are not so steep that this becomes a life to be avoided.
If Regan and Wayne were getting the support they clearly desperately need, 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 raising a special needs child. Their decisions now are based around trying their best to cope with a life that isn’t supported by the community they live in.
When I read this article I winced. I saw some of myself, I saw a family struggling, and I saw a family that would immediately be judged. Let’s not judge and condemn them. Let’s judge and condemn the community and society and laws which forced them to go to such extreme measures to take care of their daughter. It shouldn’t be that hard.
Tessa Prebble is the writer/producer/creator behind The One in a Million Baby. Her podcast began in September 2015 and features interviews with different families living with special and medically fragile kids. It aims to tell the stories of those families so that those who are going through something similar can feel less alone, and those not in their shoes can learn about their lives. Follow the podcast through iTunes, Stitcher Radio or her blog. You can find Tessa on Facebook and Twitter.