Because not doing it is harder.

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?

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Photo credit – The Age

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.

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35 thoughts on “Because not doing it is harder.

  1. Breaking: Unfortunate infant is forced to go to Australia with two awful parents whose love is full of stipulations. Watch yourself, little girl.

    In a related story, her twin brother was spared this fate, and has literally the entire world to look after him.

  2. A close family member supports the work we’re doing supporting expectant moms in continuing their pregnancies. But he said, “ultimately, your mission will fail. You’re asking people to make the hard choice, and we’re becoming less and less of a society that does that.” Which is why I so enjoy your point that not loving a child is actually the harder choice. Thank you. I expect I will use this (with attribution) in future presentations.

    • Thanks Mark. I really hope your family member is wrong. It was really liberating to see the media coverage here today. The issue of surrogacy exploitation was big but I felt equal weight was given to the fact that he was left behind because he had DS.
      Have you read the book The Memory Keepers Daughter?

      • Letitia I have read The Memory Keepers Daughter and I have also known one twin who was separated from their sibling at birth (due to adoption in the 1960’s). It wasn’t until he was 25 that he told his parents he had felt ‘like a part of me is missing’ his parents thought he was talking about his biological parents and in part he was but he said he had experienced peculiar ‘medical events’ throughout growing up but nothing was actually physically wrong with him. Anyway after a lengthy search he found his biological parents and his twin. I believe that Gammy’s sister will know as she gets older that something or someone is missing from her life and shouldn’t be.

  3. Its not nasty parents looking at down syndrome and.”seeing” an illnesd. For many, its not the title down syndrome at all. You only have to look up thaf long list of illnesses that come with that title, and thats when fear sets in. Some people simply cannot stay home with a baby plagued with serious medical issues. Some can, some cant. Hasnt anyone told you that they dont give a shit about low muscle tone? Its the illnesses!! When your baby has been so sick in their short life and that list is veing ticked off one by one and you are so scared, thats the meaning of down syndrome. Not smiley faces.

    • Think about it this way. They sat kids werent born with a manual. Well, for babies with ds. Its not a manual as such, but a book with chapter after chapter of illnesses that put babies in hospital. They say your child might get some, your child might get all. You and others like you need to wake up. There is a law against letting down syndrome babies be born when it went undetected during.pregnancy. Do you know why parents have the right to sue?? Because those illnesses cause a massive amount of nervous shock of heartache and stress for chil

      • Thanks for your comment. This is an emotional and difficult issue. I have said in previous posts that I don’t speak on behalf of parents who have sick kids because I have no idea what they go through. I imagine it is really hard and I feel for you. The distinction I have always tried to make is that a diagnosis of Down syndrome can’t tell you what your child will be like. It does come with challenges and it is not all rainbows and unicorns. I make that point in the article. Parenting is hard full stop. Challenges can come with any child. I am trying to separate Down syndrome from the illnesses that may or may not come with it. Wade has no illnesses at all and has changed my life for the better. That is my story and one that I think is important to be heard in the mix if stories. The more information that is available, positive and negative, the more understanding there can about what Down syndrome can mean. The point I’m trying to make is the NO parent gets a lifetime guarantee card with their baby.

      • I also don’t know the pain of the illnesses. But I know that family means no one is left behind. Ever. You take the pain together. You fight the illness together. I know that’s easy for me to say, having a son with Down Syndrome is one thing… facing life threatening illnesses is another… but it’s no less true. Family means no one is left behind. This Australian couple doesn’t understand what family is. And that’s why this little girl they’ve taken home will need to watch her back for the rest of her life. Because the people around her consider family a choice. It’s not.

        I truly believe the boy is better off than the girl, for that reason.

  4. It’s a great point you make Keighley makes. I often talk in terms of these being wanted pregnancies for similar reasons. If there was no embedded discrimination mums would just get on with having great lives with their wanted children. A diagnosis wouldn’t be a drama or change the course of health care that she sought when pregnant. That’s the dream. Human nature seems somewhat different perhaps?

    • I would just like to see the range of information about Down syndrome presented so that parents don’t automatically associate DS with bad news. I don’t think its helpful promising a lifetime of happiness with any child. I try to make the point that trying to avoid challenges in parenting won’t be achieved by avoiding DS. The response to this story was really heartening to see.

  5. I too have a lot of mixed feelings about this story and feel compelled to point out that we don’t really know anything if the biological parent’s story – is it possible that they didn’t know baby Gammy wasn’t aborted? A lot of moral outraged followed the breaking of this story, but really these parents did what over 90% of parents in Australia do when they have a pre-natal DS diagnosis – they asked for a termination. So from the outset, I didn’t really have any tears for Gammy – he is living with a mother who wants him, who chose him, who is caring for and who obviously has the strength of character to live by her convictions. He also has the goodwill of the international community that has raised over $110,000 for his medical needs (“$110,000 raised for abandoned Down Syndrome” according to a major network morning “news” show today – love that people first language!). My pity is for this couple who are now demonised- deservedly or not- for acting out of the fear and ignorance that is still ingrained in our society when it comes to disability and Down Syndrome particularly. I pity their daughter, who is no doubt missing her brother, and will miss the experience of growing up with him. I pity them for the damage they have done to their family and themselves and for the consequences that will follow them their whole lives. We have a long way to go as a society as far as accepting difference and disability is concerned, but sympathy isn’t needed by you or I or Gammy and his surrogate family- it is needed by those who still live in fear and ignorance and missing out on joy and love and completeness

    • I think we are saying very similar things. I would only say that the biological parents had no way of knowing things would work out ok for him. In fact on face value they left him to die. It was only the outrage seen in the community that has possibly given him some hope.
      I made mention that I didn’t want to speculate on the parents circumstances because there may be things we know nothing about but I hope the broader message of accurate info about DS both positive and negative can get out after this.
      I also think about the parents and I guess this is the point of the article that maybe walking away in this circumstance will be the harder path for them. We may never know.

  6. Thank you so much for trying to mention the other issues in this case. It has really been bothering me that the discussion around this case keeps boiling down to “do you keep the disabled child or not”, when I think the entire surrogacy setup was doomed to fail.

    I also really agree about wishing a wider, more accurate picture were presented about what DS is and isn’t. A big frustration of mine.

    • Absolutely. There is so much wrong with this story…I felt like I could write a thesis on it! It actually clarified a lot of thoughts I’d been having recently but I decided to keep it shorter…
      Great to have you back! I’ve missed your comments

  7. Has this story been verified because it sounds like a scam to raise emotions and sound the alarm on termination for DS. It has agenda written over it.

    There are inconsistencies in the story, such as the mother claiming she didn’t abort because she thought it was a sin. But the story then says she is a Buddhist and sin is not part of their religion.

    There are no quotes from the agent the doctor or any medical professionals. There’s no comments from the people who gave prenatal care or the care of the infant after his birth. Indeed, the whole birth process and adoption are not mentioned at all. When was the sister of gammy adopted?

    Who was the surrogacy agency? Where are the maternal fetal medicine specialists who would have monitored a high risk pregnancy, which is what twins require even if there were no Down syndrome present.

    Why does the baby look Thai? That’s not to say the Australian parents may not be of Thai descent, but the story reads of the egg from the fertilization was from the Australian mother.

    There is a lot to be suspicious of in this story. Most of all, why has the funding goal gone from 100k to 150k to 300k?

    Why are no internation DS groups managing the care of the child. How do people know why or what is actually getting the money.

    This seems like a manufactured story to incite the pro-life faction of the DS advocates who want to force women to carry disabled children to term by restricting abortion laws (or shaming them for making this choice by wrongly stating they wanted “designer” kids). It also shines light into the porous surrogacy laws, but again, why have there been no professionals associated with the case who have spoken?

    • There are a lot of issues to do with this case. As I say in the post, I am not going to speculate on the intricacies because there may be a lot of information we don’t know about which I why I chose to write on the wider implications of the story not the details themselves. The fact remains that a child was left behind to die while his sister was taken home and that is because of he has Down syndrome. What the parents knew or not doesn’t change this point. Decisions are made every day about whether to parent a child with Down syndrome and it is this point that I am writing about.
      I chose to write about how fear and misinformation can drive decisions about whether to continue parenting a child and how I wish there was more understanding. I present a mostly positive view of Down syndrome because that has been my experience and I think parents need the opportunity to read positive stories when faced with the situation I was faced with. It might surprise you to know that I am not a prolifer rather I am pro information. I believe that parents should have full access to a range of accurate up to date information both positive and negative to make their choice. If you are a regular reader of my blog you will know that I take a lot of care to present a balanced view and usually avoid controversial topics because I can often see so many points on both sides!
      Do I wish more people could see the beauty and value in difference? Yes. Do I wish parents felt supported to raise children who might have extra needs. Yes. Am I biased toward the positive? Absolutely. Am I trying to force others to take my path? No. I am simply presenting an alternate view so that parents have a range of information to support them and the general public have something other than the negative stereotype to frame their opinions on so I’m sorry that I can’t help shed light on your prolife conspiracy.
      I doubt very much that this is a manufactured story as it has been reported on by all the major and reputable news outlets in Australia and overseas.
      I can’t answer all of your questions but I can comment on them.
      I think your questions about Buddhism and sin as well as the ethnicity of the baby are irrelevant and not worth debating. I can think of several reasons to explain these.

      The charity that has been nominated to manage the funds from the gofundme page is…
      https://handsacrossthewater.org.au

      There have been a couple of statements from Australian DS organisations about this.
      http://www.downsyndrome.org.au/news/the_heartbreak_of_low_expectations.html

      http://www.downsyndromensw.org.au

      And as I said in the piece, there are a lot of troubling issues about this story surrounding the surrogacy, exploitation, healthcare etc that warrant further investigation and questioning but that was not the point of this piece and don’t affect the points I have raised.

      Thanks for your comment.

  8. Thank you. You having articulated so well some if my own emotional response to this story. The drive for the perfect baby is very scary. And the use of impoverished women in this way is disgraceful. There are much better alternatives to aid economic development!

    Being told at 12 weeks of pregnancy that there was a 1 in 6 chance my child would be born with DS made me have to look deep inside my soul to decide what to do. I did not want a baby with DS. But ultimately any decision to end the pregnancy was a) completely wrong to me and b) completely selfish in motivation. When he was born with DS I did feel as if drawn the short straw. But not anymore. I adore my children equally. Life is not about designer babies. Life is about acceptance. And love.

    Thank you for your well written peice. Thank you for highlighting the positives from this situation. Without a doubt this story highlights the need to raise awareness around DS. It is so not the big negative I thought it was when I first received my screening results!

  9. Letticia your eloquence speaking on this topic is beautiful. These donors of semen and eggs (deliberately not using the term parents) do not know the love, compassion and wonder of the child they created. His parents who love and are raising him realise he is a gift.
    The reports coming through now claim the donors truly did not know of his existence. I know if I knew I was having twins and was only given one I would ask to cradle my child that did not survive delivery. What is the truth who knows. Life is too precious to discard. I am glad Gammy is loved. I am glad people are talking about this. I am glad you are advocating for our community other wise known as the human race, for humanity, and for looking past differences and finding commonality.

  10. It seems there are so many holes in this story it’s tragic. But this is why the DS community has such a hard time getting their message about termination, quality of life and parenting choices across. It is the desire to use a false vehicle like this support an agenda. The “wider implications” you call them. Others might say its a patent denial of facts.

    But it seems like the mom won’t talk about the agency or doctors who would verify her story. Why?
    http://www.gmanetwork.com/news/story/373353/news/world/thai-surrogate-says-unaware-twin-had-downs-until-late-in-pregnancy

    • The reason the DS community has such a hard time getting their message out there is because the wider community often find it hard to connect to an issue if it doesn’t relate to them. This story (no matter how contradictory the facts appear as each day passes) touched a nerve with parents everywhere and made them view DS in a way they hadn’t viewed it before.
      As far as using a false story to support an agenda… If you have read my blog, you will see that I have been saying the same thing for almost 18 months. That fact that more people are listening because of Gammy doesn’t diminish my message which I have been saying consistently the whole time.
      You are welcome to bring me as many articles that discuss the intricacies of the case as you like but as I have said several times, I’m not talking about the intricacies, I’m talking about the fact that every day parents decide not to continue parenting a child with Down syndrome. I am helping to give more information so they can come to a decision in possession of positive and negative information whatever that may be.
      I don’t need all the ducks to line up in a row in this story to argue that my sons life has value and it’s clear that my story may not change your mind. That’s your prerogative but I think this discussion is going over the same ground….
      Thanks for your comments.

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