“I don’t give a [expletive deleted] if he has Down Syndrome, Up Syndrome, or Halfway- in-Between Syndrome – would you please stop my wife from bleeding out so she can hold her son?”
That was my reaction to the neonatologist’s diagnosis of Down Syndrome in the Emergency Room. I simply wasn’t affected by the diagnosis. Why not?
If I had to guess it was because – months earlier – I confronted my concerns about Down Syndrome at the time Momma Bird and I were considering whether or not to get an amnio.
The amniocentesis is an invasive test. In layman’s terms, your OB sticks a big needle into your wife’s uterus to draw out amniotic fluid. The amniotic fluid will be sent to a lab, examined under microscopes, & prognosticated over by people in labcoats until a consensus is reached.
The amnio and CVS test predict, with a fairly high degree of certainty, whether or not your baby has Down Syndrome (as well as other genetic conditions, defects & disorders – some of which are really scary).
For many couples, the decision to have an amnio is not a decision at all – what was once societal pressure to preemptively discover and deal with birth defects has become a standard and routine step to ensure Momma’s pregnancy is smooth and healthy.
But for couples who spend years trying to conceive – like Momma Bird and me – the decision whether or not to have an amnio carries greater significance. A miscarriage during an amnio, a rather slight risk, sends a couple right back to “square one” of baby-making with just a little more baggage.
This decision whether or not to have an amnio became a struggle for me, and I just didn’t understand why. Having tried for over 2 years to get pregnant, and living through the sadness of 2 miscarriages, Momma Bird and I agreed we weren’t going to consciously chose to increase the risk a miscarriage. It had been decided long ago in the first pregnancy: there would be no amnio or CVS.
Why then did I struggle with this decision? Why did I need to know whether or not my baby had Down Syndrome?
I talked through my confusion with a friend and colleague whose opinions I value. I told him I wanted to be financially prepared – children with Down Syndrome are more expensive, right? I wanted to prepare for the extended family’s reaction to a baby with Down Syndrome. I wanted to know if I was going to be taking care of a child for the next 30-40 years (that was, at the time, the extent of my pathetically limited understanding of Down Syndrome).
So many worries I can’t even remember them all.
My friend cut through the bullshit and asked me 3 questions:
1) If the baby has Downs, are you going to abort? No, I answered. Momma Bird and I were and are vehement pro-choicers, and our choice was not to abort even with a Down Syndrome diagnosis.
2) Assume you found out the baby has Downs – starting tomorrow, how will that change your approach to the pregnancy? It would make me more nervous and more worried about the pregnancy. It would make me anxious about the future – ours and the baby’s. I would read dozens of books on Down Syndrome, and spend countless hours trying to anticipate what the baby would be, look and act like. I would likely have mourned my perceived loss of the perfect baby. I would spend the rest of the pregnancy dealing with that reality.
3) Is that the kind of pregnancy you want? No. So much of my life is filled with planning, reducing risk, curbing expectations – and those parts of my life have far too much anxiety and worry for me; they aren’t that much fun any more. On the other hand, this pregnancy was a lot of fun – it was invigorating and exciting: even the simple decision not to know the baby’s gender until birth added an element of mystery and excitement I could never have imagined.
My answers made it clear that a prenatal diagnosis of Down Syndrome would do nothing but force me to create and confront expectations about who my child would be — before that child could show me for itself.
I decided that if our baby was diagnosed with Down Syndrome I could accept and live with that. I promised myself I would deal with it — if and when it happened and not a moment sooner. For the rest of the pregnancy, I chose to enjoy the excitement and mystery that came with daydreaming about an unknown and limitless future for my baby – girl, boy or Johnny Depp look-alike.
When Little Bird popped out of the womb, I saw 2 things: testicles and an unknown and limitless future. (I actually yelled out, “Nuts!!” to announce his gender to Momma Bird.)
When told by Dr. Eeyore that Little Bird “has Down Syndrome”, I saw 2 things: my wife bleeding out on the delivery table, and an unknown and limitless future for my son.
Accepting, early in the pregnancy, that my baby could have Down Syndrome helped me realize that it just didn’t matter. My child would still have an unknown and limitless future.
Choosing not to have invasive prenatal testing for Down Syndrome kept me from changing that fact.
If you are faced with a diagnosis of Down Syndrome, prenatal or at birth, here are 2 great posts I think you should read. One is by a Dad, and the other by a Mom. Both will give you food for thought:
Sipping Lemonade: Dear Mom with a Prenatal Diagnosis
Treyton’s Posse: Advice about Down syndrome for fathers in honor of Father’s Dayby