Do you know someone with Down syndrome? If so, how would you describe them? Are they a burden? Do you love them any less because of their diagnosis? Is your life better or worse having them around? Do they treat you differently than anyone else? How would the world be different if we had more people like them in it?

I have so many questions that I want to ask, but perhaps I should explain where all these questions are coming from. I’m taking a break from my usual post about Hope and just sharing my thoughts after reading something today that made me angry and sad at the same time, and really just broke my heart.  I will share parts of the story here, but if you would like to read the full story I will post a link at the end.

I want you to imagine yourself as a young woman or gentleman, expecting your first baby (or perhaps you’ve had multiple babies already). You’re going about your usual day, working, perhaps doing your shopping, cleaning the house, and you receive a call from your doctor. This is a call you’ve been waiting on, you’ve had some tests done, and you’ve been waiting anxiously for the results. The doctor tells you what is, in his eyes, the ‘worst possible news’, then proceeds to tell you that he has booked you in for a ‘TERMINATION’. Before you have even been told the results, before you have even been able to consider anything, the doctor has decided your child does not deserve to live. It sounds horrible, doesn’t it? But that’s basically what happened to this couple. And to make it worse, this isn’t the first time it’s happened. This happens more often than you or I could probably imagine.

To make matters worse, it doesn’t end there…

“After receiving the prenatal results, they met with their doctor and were given a Down syndrome fact sheet but said the care in the weeks following was “minimal” and “next to nothing”.

Obviously, their doctor was so against this couple bringing a child with Down syndrome into the world, that they felt like neither the couple or their baby deserved the same care that others deserved. Pregnancy isn’t a walk in the park, it’s not easy. Some people, like myself, don’t really enjoy the pregnancy part. Don’t get me wrong, I love having kids, I love parts of pregnancy, but there are things that I’d rather not have to deal with. I’m sure I’m not the only one that feels like this. Add to that the difficulty processing that you’re child has Down syndrome and having little help or support from your doctor, the one you thought would help you through it, the one who you thought was going to help look after you, the one you thought would help give you all you need to make informed decisions, pregnancy is now so much harder. I imagine you’d feel more alone than ever, drowning in your thoughts and feelings and if you can’t go to your doctor, who can you go to to talk through it? I honestly feel for these parents and I am so glad Ben and myself were never faced with this same scenario.

Now, I said this isn’t the only time this has happened, and the story tells of another family. They were told at 20 weeks that their son had a heart condition, and would likely have Down syndrome, which was then confirmed through testing. Doctors told them they could help the heart but they could not “fix the fact that your son has Down syndrome.” What exactly needs to be fixed? These kids are not broken. So they have an extra chromosome, that doesn’t make them ‘broken’ in any way.  I had 7 crumpets in my packet of 6 the other day.  Did I try and fix that packet? Did I throw it away? Did I just get rid of the “extra” one? Did those crumpets taste any different than the crumpets I had a few days before? No, no, no and no. Those crumpets were no different from any other crumpets I’d ever eaten. I ate them the same way I always would. I treated them no different. Now I know this seems completely ridiculous to be talking about crumpets when this is really about children with Down syndrome, but hopefully, it helped get what I was trying to say across.

And once again, the story doesn’t end there. As if saying their child couldn’t be “fixed” wasn’t enough, the doctor then told them their child would be a massive burden and might destroy their marriage. Sure, there are marriages that have ended where they’ve had a child with a disability, but there are also many marriages that have ended without a child with a disability. Should that be a factor when making a choice between whether to give your baby a chance at life or not?

In a recent survey, 49% of families felt pressured to terminate by healthcare professionals, 42% received negative information and 45% did not receive appropriate support. But here’s the number that really breaks my heart:

“It is estimated that when prenatal screenings detected Down syndrome, 90 per cent of pregnancies were terminated.”

Something isn’t right. Something needs to be done. I wonder how many of those terminations are simply because people felt like they had no other choice. I wonder how many terminations are simply because they have no support from their doctors. I wonder how many are due to the lack of care felt for them and their unborn child.

I have heard stories myself from parents that have been told ‘your child will amount to nothing’, they are ‘a waste of space and bringing them into the world is unethical’ and also  ‘children like that should be eradicated’. Imagine if someone said that to you about your child. It’s disgusting! No life is worth more than another. No child is less valuable. And nobody can tell me that my daughter is a burden to anyone. I am reminded of one of our stays in hospital. We were opposite a woman and her 12 year old son. He was non-verbal and barely able to move. This young boy was fed through a tube, he couldn’t use the toilet, and he was unable to cough up any of the phlegm that would gather in his throat leaving it to be removed through a suction tube. Do I think that woman made the wrong choice bringing her child into this world? Do I think he is worth less than my children? Do I think he is a waste of space? No way. Perhaps her child is not going to achieve ‘success’ as we all know it, but he is going to be successful in other ways. While he could barely move, and couldn’t speak, you could see the love he had for his mum and the joy he brought to her and I made sure I told her. It was like they had their own language. It was beautiful. And I think that makes the world a more beautiful place. Watching them, taught me more about love, and I think that’s something we can learn from a lot of kids like him. That’s how he is successful. There are lessons they can teach us, that we are not going to learn from others.

To say that a child is never going to achieve anything great, or to say they are a burden is crazy, especially for an unborn child who has had no chance to prove themselves. We wouldn’t say that of a child without any disability so why do people think it’s ok to say it about those with Down syndrome or another diagnosis. Simply go to Google and you’ll see stories of plenty of successful people with Down Sydnrome. Here’s just a few:

• Sujeet Desai– Graduated highschool with honours,  mastered 7 instruments and has performed in 13 countries.
• Isabella Springmuhl Tejada– Fashion designer with a showcase in the 2016 London Fashion Week.
• Tim Harris– Had his very own restaurant in the US.
• Collette Divitto– Created her very own cookie recipe that has gone on to sell millions. She now employs 15 others.
• Angela Bachiller– Became a councilwoman in Spain in 2013.
• Madeline Stuart– Model known around the world.

I don’t intend to make anyone feel bad if they have terminated a pregnancy due to a Down syndrome diagnosis, I just want to share what is happening. It’s something people don’t talk about. Unless you go through it, you don’t see all the negativity, you don’t see the lack of support. I’ve said it before, and I’ll say it again, Ben and I have been extremely lucky and have felt extremely supported through everything, but we know there are many that have had very different experiences. If there was a way to ensure everyone had the same treatment, the same support, and the same care that we had, perhaps that number of terminations would be reduced. It’s all about perception and understanding, and this really comes from what we read, see and hear. We all need to be educated when it comes to not only Down syndrome but all disabilities. It leaves me with some final questions… What can we do to help? How do we educate both doctors and families? What can be done to show the world how amazing these people can be? Unfortunately, I don’t have the answers but I’ll keep writing, I’ll keep talking and hopefully, the right ears will see or hear when they need it.

Before I finish, I want to go back to my original questions and answer them.

• Do you know someone with Down syndrome? Yes, my daughter.
  • If so, how would you describe them? A shining light and a ray of hope. She brings smiles everywhere she goes. She’s challenging, but in a good way. I learn daily from her. She strengthens me and makes me realise I can be more than I believe.
• Are they a burden? Definitely not.
• Do you love them any less because of their diagnosis? No. Her diagnosis makes her who she is and I love her for it.
• Is your life better or worse having them around? Definitely better. (See above answer)
• Do they treat you differently than anyone else? No. She gets excited when she sees me, and while she can’t say it, I know she loves me just as much as her brothers.
• How would the world be different if we had more people like them in it? I think we’d learn to love and accept more completely, and that would make a huge difference in today’s world.

Here is a link to the original story: Families feel pressure to terminate after Down syndrome found in prenatal screening.