Today, though, I am angry. My hands shake and tears sit in the corners of my eyes because of a huge injustice that has been committed. An innocent, beautiful life has been lost due to doctors and nurses painting a hopeless picture of the future for this precious child. They failed completely to provide any positive knowledge or support or actual accounts regarding what a Down Syndrome diagnosis looks like in a person living with it today. At this couple's most vulnerable time, these people who are supposed to look out for us have only caused agony, regret and turmoil in the facets of mind, body and soul.
This cannot be undone. These parents will never know just how amazing their child could have been. They will never see their baby become a beautiful adult and achieve his/her full potential. They will never celebrate as their toddler reaches each milestone just like his/her brothers and sisters. Their living children will never know the joy and fullness that growing up with a child with special needs can bring. What a tragedy.
They are not the first to experience this injustice, and it happens every. single. day.
Doctors and nurses, I plead with you! Before you urge a parent to terminate a pregnancy with any kind of diagnosis, do your research! Paint a truly fair picture of what life might look like if they want to continue on with it. Also, offer support! Provide resources for the parents to contact agencies who advocate for people with special needs and who provide early intervention. Lastly, LEAVE THE DECISION UP TO THE PARENTS! This is not your decision to make. This is not your child to keep or abort. You will go home tonight to your own family and these parents' choice will not really affect much of your life beyond the short time you spend with them in your office. However, the outcome of the situation will have lifelong effects for the family. So, take the pressure off. Offer well-rounded information to help them sort out what they want to do, then sit back and let them work it out on their own.
People of the medical field, PLEASE realize how you might be causing parents who are already hurting even more agony and turmoil. By presenting one-sided, hopeless information and urging them to terminate without helping them understand ALL of their options, you might encourage them to make a decision they will regret for the rest of their lives.
Parents, if you are experiencing this very pressure and picture of a bleak, black future, know that there is another side to the story. Just briefly, I'll tell you that children with Down Syndrome can walk, talk, play, learn and socialize just like everyone else. Beyond that, they bring so much light to the darkness of the world that I have only ever seen in people with special needs. Our lives have been vastly enriched by our little Layna and we feel incredibly blessed by her presence. I encourage you to talk to someone else about what you are feeling in this situation. It can be a very lonely, confusing time, so talking about it can help straighten the jumbled mess of thoughts swimming around in your head. I, for one, would be more than happy to hear everything you have to say and open up to you and tell you how it is from my point of view - the good, the bad, the ugly and the beautiful. You won't feel any pressure from me, I promise.
In a time of ever-increasing acceptance and understanding of special needs, it pains and infuriates me that health professionals seem to remain in the Dark Ages when it comes to information on the quality of life of extra special people. Telling parents that their babies are better off dead is a lie. It's time to tell them the truth. It's time to change.
