My thoughts and emotions have been spiralling all over the place today. Today I read that an Australian couple chose to use a Thai surrogate to birth their baby conceived during IVF. The surrogate was actually carrying twins, a boy and a girl and four months into the pregnancy, it was discovered that the baby boy had Down syndrome. The Australian couple asked the surrogate to terminate the pregnancy but she refused. After the twins were born the couple took the girl home to Australia leaving the boy behind with the surrogate.
Compounding the whole situation is the fact that the baby has a congenital heart defect. Around half of all babies born with Down syndrome have a heart defect. It is quite common and, in Australia, it is quite easy to fix. The surgery, while major, is considered routine here with extremely good outcomes.
In Thailand however, this surrogate is unable to afford the operation. A vulnerable woman tempted by a dodgy surrogate agent to make some money to pay off debt, is now left with a child that is not hers, a child she had no plan to raise without the resources to provide for him. Without the operation, the baby will most likely die.
There are so many horrendous issues surrounding this story not least of which is the practice of using impoverished and exploited women to birth a baby on the cheap…
Telling the surrogate to abort the “unwanted” baby against her own religious and moral beliefs…
A dodgy surrogate agent refusing to pay the surrogate for the baby the couple didn’t take home…
The list of aspects to this story that breaks my heart goes on and on but the one part of this shitstorm that hits me the hardest is this…
How is it that difference and disability is so feared and so misunderstood that getting on a plane and flying away, leaving your own child with a woman who cannot care for him to the extent that he may well die….is actually the preferred option?
I was so heartbroken by this story. Parents of children with a disability are sometimes asked “How do you do it?..” And my answer has always been “Because not doing it is harder.” I used to say that because I believed that once parents met their baby and understood the reality of raising their child they would see that parenting is just parenting. There are always challenges and there is always joy and they come in different measures at different times and it’s the same for everyone. I used to say it because it was a way for other parents to understand that when your child needs something you just do what needs to be done for them whether it’s a tissue for a runny nose or a heart operation. You just do it because you’re a parent and you don’t get to choose which aspects of parenting you are going to do and which ones you aren’t. You do it because the child is a child and not loving them, not being there for them and not embracing them fully into your life is harder.
I used to say it because I thought it was universal. Now I just don’t know anymore…I know there are many really crappy parents out there who don’t look after their children…but this story seems to jump the boundary of neglect. One child was wanted, the other was not. This says to me that difference is so unwanted and so unaccepted that for some people, the fear is more important than the child and this breaks my heart a million times over.
I’m not going to weigh in on the intricacies of the case and speculate on how this particular couple got to the point where they can walk away but the fact that it happened at all leads to a wider discussion about how important it is to spread the message far and wide about the value of our children. I started the day feeling dejected. Feeling as though all the advocacy in the world is pointless when it felt like the mountain we are trying to climb just doubled in size overnight. But throughout the day, as I saw the outrage across the whole of society, not just the Down syndrome community, I put those negative thoughts aside and realised that our message is more important than ever. Advocating on behalf our kids in the media, in schools, in workplaces…everywhere…is important because the more that mainstream society understands about difference and the reality of what it is like to live with Down syndrome today, the less likely that this situation will occur. The more people see that our kids are just kids. That they have hopes, dreams, abilities and value just like everyone else, then maybe people will be less likely to presume they can’t do things and put unnecessary barriers in front of them. The more familiar people become with Down syndrome, the less fear of the unknown there should be and more and more opportunities should open up for our kids.
This awful situation has also made me think about the unrelenting pursuit of the “perfect” baby. Reproductive technologies are moving at such a rate that picking the baby you “want” is becoming as easy as picking what salad you will have for lunch.
We don’t need better babies, we need better adults.
Adults that put aside prejudices and stereotypes and look at the facts before deciding whether to keep their baby.
Adults that ask themselves how they can make the world better for children rather how they can make better children for their world.
Adults that can see that Down syndrome is not an illness or a death sentence and that any child can face challenges despite the number of chromosomes they have.
Adults that understand there is so much to be gained from embracing difference.
As the day wore on, my spirits lifted.
I saw the outrage that this story evoked in many people from all parts of society not just within the Down syndrome community.
I saw that a lot has actually changed since it was routine to leave a child with Down syndrome at an institution and “get on with your life”
I was contacted by friends concerned about how the story would make me feel because they know Wade and know how loved he is.
I saw that the surrogate mother had decided to embrace this baby as her own, naming him Gammy and making him a part of her life even though she has even less resources to support him than the family who left him behind.
I saw that a fundraising page had been set up to raise funds for his heart operation and ongoing needs that has raised over $67,000 in just a few days
I saw pictures of Gammy being cuddled and bathed by his new family and I felt much less heartbroken.
I saw people were talking about Down syndrome on the television and the radio and I hoped that out of a story that left me crying in the morning maybe a whole lot of good can actually come from it.
I tucked Wade into bed tonight, I kissed him on the forehead and I thought about the countless ways he made me happy today. The way his whole body lit up when Dad brought home a giant play castle for him and he dove inside to play. The way he climbed up onto his reading chair and “read” me a story with all the fervour and gesticulations but no actual words! The way he had the entire restaurant in the palm of his hands as he does every week when we go out for lunch. The way he presses his ear against my head when I sing to him so that he can feel the vibrations and the way he plays the drums like a man possessed and I promised that I would keep telling anyone who will listen of his value and his place in the world in the hope that one day I won’t need to anymore.