Excuses, Excuses

Ten years ago a close friend of mine came to me when she was 18 weeks pregnant and explained that her child had Down syndrome and that she and her husband had decided to abort it. She told me that the doctor said it would be a financial burden on the family and that it was unfair to their other three children.

I felt really bad for them and never gave much thought to their reasoning.

She delivered her dead child, held him and had photos taken, named him something angelic, and then had him cremated and put in a fancy urn. He took his place on the mantle above the hearth in their formal livingroom. Occasionally it would come up that they’d “lost” their son, though we all knew where he was. They went on to have two more typical boys and are just now wrapping up an ugly divorce.

I know all the excuses for why you might throw away your baby with Down syndrome. I have heard them all because I told myself each one of them after I got my prenatal dx of Down syndrome. This time it was my life, my child, my duty to give thought to the reasons why.

1. A life of suffering... I wouldn’t do that to my child. Yeah, me neither. Guess what? It is not a life of suffering. People with Down syndrome do not inherently suffer. I thought about the people I had known in my life that had Down syndrome. I couldn’t pinpoint any real suffering. They love, laugh, learn, and spend their days being generally peaceful.

2. All those medical problems... what kind of life is that? I read the long all-inclusive list of medical problems that children with Ds might have. I researched and found that while it is true that certain medical conditions are more common in people with Down syndrome than in the general population, that doesn’t mean that most people with Ds have ongoing medical problems. Some children with Ds will face congenital medical challenges, the biggie being cardiac defects.

My baby had a major cardiac defect and I was scared. But a fetal cardiologist explained that my child (like most children with Ds who have cardiac issues) had a very common defect that could be completely repaired in early infancy. Is heart surgery scary? Of course it is for the parents and loved ones but it is also just a 5 to 7 day hospital stay with over a 90% complete success rate.

Bottom line? Almost all infants with Ds who are born with congenital defects get a fix within the first year of life and from then on face only the basic bugs and boo boos of childhood like all other children.

3. It isn’t fair to our other children. What isn’t fair? The “extra attention” my little Henry might get from an early intervention specialist? That my Johnny might have to hear a nasty neighborhood kid call his little brother a disparaging name? Seriously? This is a reason to end my baby’s life?

I have another good friend who has a little brother (grown up now) with Down syndrome. In the 14 years I have known her she has never even hinted that she was unhappy about him or that she felt that it was unfair to her in anyway. In fact, she always spoke of him and treated him with love. She once told me that she didn’t even know growing up that he was considered moderate to severely mentally delayed until she read some of his paperwork years later.

The reality is that she experienced unconditional sibling love and she saw her brother work hard and consistently to achieve milestones.

Is it possible that my Johnny may experience some rough times concerning his sibling with Ds? Yes, of course but I found that there are lots of sibling support programs that can help him grow through those times.

4. Who will take care of this person when I die? I agonized over this one. I didn’t know that because of early intervention and medical advances, it is expected that kids born today with Down syndrome will live independently with minor support. I didn’t know that I could set up a special needs trust (funded by life insurance) that could provide whatever my son needed.

Eventually I decided that I just had to trust that my child would grow up to have friends, family, neighbors, and various paid staff that would care enough about him to provide any support he might end up needing.

5. People with Down syndrome have short (50-60) year life spans... how can I knowingly give birth to a child I will most likely outlive? Ok, this one came and then went rather quickly as soon as I considered the alternative, “Should I end my baby’s life so that it doesn’t have a short life..?”

6. This child will be a financial hardship on our family. I remembered what my friend had been told by her doctor. We are not rich people. I got nervous. So I looked into what exactly was going to cost so much more for this child. Housing, clothing, diapers, food... none of this would cost more. Health care? A deductible is a deductible and a co-pay is a co-pay, Down syndrome wasn’t going to change those numbers much.

Are there people whose insurance companies will deny coverage for a pre-existing condition who cannot get their child covered under Federal Medicaid? Maybe, but we are not them. Would I have aborted if we were one of them? Would I let one of my other children die if they were stricken with a life-threatening illness or accident for fear of medical bills?

7. Is it fair to have a child that will likely use more resources than it can produce? I come from a long line of working, tax-paying people. I have family members who have fought in wars to protect your freedom and lifestyle and that of our children. I (and my many childless friends) contribute to my and your typical children’s educations in the form of school taxes. My husband and I, and our family, and our friends have more than paid my son’s debt to society.

But even if that were not the case, should poor, non-land-owning people abort their children because they are a drain on our society’s resources? If you answered yes to this question, you have more to whine about than a few babies born with Down syndrome.

8. My child won’t have a normal life. What the heck is a “normal” life? I figured I hadn’t lived a normal life and I am no worse for wear... Now I know that if normal means to walk, talk, read, attend school, have friends, play sports, fight with siblings, grow into a responsible adult with the possibility of attending college and getting married, then my son is experiencing a normal life.

For a while I wanted one or more of these excuses to feel justifiable and good but none would give me the peace I needed. So my husband and I decided that Henry would live. I do not judge my friend who came to a different conclusion. But I do feel sad for her. She once confided to me that it hurts her to see my beautiful son. She has an urn and I have a lovely child full of life and laughter. And this child of mine, he blows away every excuse in the book.

Why do I care that you should know this? Because someday you might be hearing these excuses in an up close and personal way.

Written by November who was motivated by Tara (and I even plagarized her a bit)