I cannot pretend to know what it's like to have my baby prenatally diagnosed with a fatal condition. That is a road I haven't walked. But, the majority of terminations for medical reasons are for T21 (or Down syndrome) and that is something I can speak to.
In listening to women discuss why they chose to terminate for Down syndrome, I'm struck by how untrue their reasons are, or at the very least, unknown.
1. My baby wouldn't have a normal life. What is the definition of normal? If it is 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 this reason is false. We are seeing persons with Down syndrome accomplish this and much more.
2. I couldn't let my baby suffer. Suffer? Really?!? Have you seen the pics of the kids on the Down syndrome board? Have you ever met a person with Ds? This is a group of individuals who embrace life, and expect you to do the same!
2b. My baby had a heart defect and would've needed countless surgeries. An estimated 50% of kids with Ds have cardiac issues, but many of those will never need surgery. Of those that do, the most common problem is an AV Canal defect (also one of the most serious). However corrective surgery for this is so common that it is often referred to as "routine" and boasts a success rate in the high 90s. Heart surgery is not fun. It is scary for all involved, but most of us found waiting for surgery to be much more daunting than the actual event. Pediatric hospitals are experts at pain control and keeping our little ones comfortable. Most of our heart kiddos will not need another surgery and the average hospitalization is 5-7 days.
3. We decided it wasn't fair to the child/children we already have. The first person to congratulate us on the birth of our son was a man whose brother has Down syndrome. He said, "Your children are about to know a love like no other!" Siblings are a gift, regardless of the number of chromsomes they have. There may be more appointments and therapies for the child with Ds, but it's not an either/or proposition. Our youngest is just one of the bunch. He gets therapy; the others get sports or piano lessons.
4. There will be no one to care for our child when we are gone. Because of early intervention and medical advances, it is expected that kids born today with Down syndrome will live independently with minor support. That support can come from friends, neighbors, or social workers. Unfortunately, as the average lifespan for a person with Ds is only 50-60 years, it is possible that you will outlive your child, as well.
Of course, there will be exceptions to what I've written. Life is full of exceptions and completely lacking any guarantees. Those are the unknowns that I referred to. But, we face unknowns with our typical kids every day. I had no idea that my typical daughter would fall from her crib at 2 years old and break her leg, requiring surgery; or that my typical 9 y.o. would struggle with dyslexia and ADD. There was no prenatal test to inform my friend that her 4 y.o would develop a tumor and require the surgical removal of a kidney and countless hours of chemo and radiation.
But, like Down syndrome, the above challenges are just a tiny part of life. We just do what mothers do - we take them one day at a time.