Now that the Down syndrome blood test is a reality, there’s a high probability that lot of women will face the question of what to do if they are told that their baby will be born with Down syndrome.
The test is already available in more than 70 clinics in Germany, Austria, Lichtenstein, and Switzerland. As expected, its launch has generated polemic reactions in parents of children with Down syndrome who consider the test as degrading to the lives of their children, and on the other side, scientists who assure that the purpose of the test is to avoid miscarriages as a result of amniocentesis, a risky, invasive test that has up until now been the only accurate way to screen for Down syndrome.
At this point, the test is available, so its good or bad ramifications don’t really matter. And because more families will learn in the early weeks of pregnancy that they are expecting a child with Down syndrome, they will need support and resources to plan for their new arrival.
As the mom of two children with Down syndrome, this is the advice I would give to parents who learn their child will be born with an extra chromosome:
- I don’t judge the pain and disappointment you may be feeling right now. It’s okay to feel scared of unknown things.
- The best way to overcome your fears is to face them. Truth comes with education. Don’t make a decision without giving yourself the chance to learn the truth.
- When I was told that my first child would be born with Down syndrome, I cried a lot. I didn’t want to know more about the diagnosis, as I didn’t want my child to be labeled. I always thought that the less I knew about his condition, the more I would learn about him as an individual. However, now I know that I missed an important opportunity to educate myself and to get ready to receive that child. Had I educated myself, I would have known then, as I do now, that there’s nothing bad about having Down syndrome. He has been always my perfect child, and yours will be too, if you give him the chance.
- When I got pregnant with my second child, I didn’t want to do the test. I already knew that I loved that girl no matter what her diagnosis was.
As a woman and human being, I would tell them:
- We grow on challenges. The most amazing part of this experience will be when you look back and realize how much you have grown and how you’ve discovered new ways of living and loving.
- I’m a better person because of my kids’ love. Down syndrome has nothing to do with this. My life is not about Down syndrome; it’s about loving these kids with all my heart, just because they are mine and they love me without boundaries.
As a professional, I would tell them:
- There’s a lot of work to do; and you’ll learn to direct all your knowledge and passion to making this world a better place for your children.
- Raising a child with Down syndrome is a great adventure that gives you the opportunity to reinvent yourself not only as human being, but also as a professional. The motivation that my kids have brought to my life has taken me to a new level of possibilities. They inspire me to keep going, to never give up, and to trust God with all my heart.
- There’s nothing impossible to get. This is not about making them look like anyone else, this is all about being the best that we all can be. The perfect mix of unconditional love and their unique abilities will take you to a new and amazing place called: Acceptance.
Where to go, who to call if your child has been diagnosed with Down syndrome?
- Look for parents of older children. Don´t be afraid to ask. You’ll be surprised!
- If you don’t feel like asking, take time to observe special needs children and their parents, and you’ll find answers. They have been always there; it’s just that before having a child with special needs, we don’t realize how close they are. Listen to your heart, and flood prejudice with love.
The Global Down Syndrome Foundation and the National Down Syndrome Congress have created the “Down Syndrome Prenatal Testing Pamphlet”. Download it here.
If you want to know about the lives of two kids with Down syndrome, let me introduce you my children: Emir and Ayelén.
I’m sure you would like to ask me If I’m happy while raising two kids with Down syndrome. Well, my answer is a totally “YES.” I have never, ever in my life been so happy. Down syndrome is just an extra chromosome that produces some physical and developmental differences, but love and the pride for the big and small achievements – those feelings are exactly the same, or even more meaningful than anything that you have known until today.
Don’t let Down syndrome tell you what to do. You’re the one who decides to give this child the chance to demonstrate that no extra chromosome has the power to affect the perfection of God.
But anyway, if you decide to not to give this child the chance, please don’t blame Down syndrome or the genetic test, as there are millions of parents like me who have welcome this life, and no matter what, we feel proud of them and happy to have them in our lives.