During the first trimester of pregnancy with one of my 2 sons, I underwent extensive testing because of my age. One test came back with very high markers for neural tube defect. Another test, one for Down syndrome, came back with very bad odds as well, so they did a detailed ultrasound to look for physical markers of Down syndrome. They found two: my baby had a shorter femur than he should have, and the second one was the nuchal fold. I also found out the baby was a boy.
The obstetrician told me “No one would blame you if you chose to terminate the pregnancy, considering everything”
It was 2 weeks of sheer hell as I waited to undergo another detailed ultrasound to once again measure for Down markers. They were still there. I cried for days on end. How was I going to do this? How?! Ultimately, scared to death after having previously had 5 miscarriages – the 4th one which was actually due to Down syndrome…a baby girl – I opted to have an amniocentesis done – despite the miscarriage risk. I had to know for certain if this little boy I was carrying had Down syndrome or any other challenges. I just had to know. I didn’t want to wait until the baby was born.
I had the amniocentesis. There were no complications with the procedure and I went home to rest for the day. The doctor told me there would be 24 hour preliminary results, and then the confirmative results a week or so later.
The day after the procedure, I got the phone call. The 24 hour results were in. The nurse said first of all they know the baby’s gender and asked did I want to know. I said how I had already found out during the ultrasound – which I did because I wanted to feel more bonded to this baby I was carrying who, for over a month at that point, was looking like he would be severely disabled. I named him the day I found out his gender. I didn’t tell anyone. I told him, though. And I would talk to him. I would pray, endlessly, that he be healthy. Please, God, please…I just cannot handle it if he isn’t healthy, I cried.
Back to the nurse on the phone. The results of the amniocentesis were in.
My baby boy was COMPLETELY HEALTHY.
NO DOWN SYNDROME.
NO NEURAL TUBE DEFECTS.
NOTHING WRONG AT ALL.
The tears streamed down my face as I shouted out THANK YOU, GOD!!! THANK YOU!!!
Now, the rest of the story…
That baby boy is now 8 years old. His name is Declan. And the day I got the call with the 24 hour results I was standing in the pre-op room with my severely disabled son Brendan Bjorn who was about to undergo major surgery on his hips. The nurses outside the room came in when they heard me shout out. They saw me cry and asked what happened. I told them and they hugged me.
And despite a very difficult pregnancy with gestational diabetes, preeclampsia and an urgent C-section at 37 weeks, Declan was born healthy, vibrant, and a miracle like no other to me.
So, why am I writing about this now? What does this have to do with my other son Brendan Bjorn and my writing that is centered on the journey with a child who has a life-limiting illness?
There has been a lot of discussion lately in the news, both in Ireland and around the world, about children with disabilities being abused, and unborn babies testing positive for medical complications, and should people have to right to terminate or not. I’m not here to make that decision for anyone.
What I am here to say is this: A disabled child’s life is of equal value and importance as that of a healthy child. Full stop. No doubt. Equal.
Yesterday, I had a very thought-provoking conversation with a friend of mine who is also a special needs parent. We were discussing this very subject – how the life of a disabled child is of equal value and importance as that of a healthy child. Our conversation came around to our own special needs community and how even parents on this journey can undervalue the lives of disabled children by thinking that there is something understandable when a parent takes the life of their disabled child. They were exhausted, burnt out, they weren’t getting enough support, etc. I ask, does the child having been disabled make it any less of a tragedy that a child’s life has ended? Do we have a softer spot in our heart for that exhausted special needs parent as compared to a well-rested parent that ends the life of their healthy child? It’s a question that we don’t dare ask in our special community. We can’t face the answer. Or can we?