Navigating Through the Darkness: tough decisions after a prenatal diagnosis

In theory, the decision to keep my baby should have been easy.

It should have been easy for the girl who had been raised a Catholic and had seen her parents live the message that ‘all life is precious’ all of my life. It should have been easy for the girl who had all the theories in the world on what was right and wrong.

In theory, the decision to keep my third baby should have been easy, but I’d never walked in these shoes before. I had never had anyone tell me that the baby I was carrying wasn’t ‘perfect’. I had never before felt like I was navigating through such complete and overwhelming darkness, and been so lost.

Two days after an amniocentesis, eighteen weeks into our pregnancy, my husband Ben and I were told the confronting news that our baby had three copies of chromosome 21 in all his cells, and therefore a diagnosis of Trisomy 21, or Down syndrome, was confirmed. While we had already had many heartwrenching conversations about loving this baby regardless of how the prenatal testing pendulum swung, having that result in black and white raised some even more difficult questions. And plenty of fears.

I’m not opposed to prenatal testing. Despite the stress levels and heartache, it did enable us to grieve and prepare before Nicholas arrived, so we could welcome him joyfully when the time came. It enabled us to share the news with our family and close friends on our terms and give them time to prepare as well. It enabled us to choose the right healthcare professionals and hospital and meant that we were in the right hands should health challenges arise, and that everyone who was present at Nicholas’ birth and in the days following knew our expectations.

But I do think prenatal testing comes with a truckload of responsibility, on the part of the parents and the specialists delivering the news.

Here I was, a smart, mature, sensitive woman with strong values, in a solid relationship, financially stable, with the support of a wide network of family and friends, and making the decision to keep my baby was very challenging for me. How is anyone in a less-than-ideal scenario supposed to handle that news without sufficient unbiased, accurate and up to date information and support?

I am grateful for the friends who sat on the floor with me, listened and cried. I am also grateful for those friends who knew how to ask the tough questions and challenge me. I will hear the words of one friend in particular in my head for a long time: “If you think you can’t handle this, you are underestimating yourself and Ben.”

While it might be impractical to think my Catholic upbringing didn’t factor into the decision to bring a child with a disability into the world, I needed it to be about more than just doing the right thing by God and by the Church. I had a husband and marriage to consider, and the lives of our other two children. There were so many facets to this life-changing choice, pulling me in every different direction. Should I bring this child into our difficult and unrelenting world? Could I live with myself if we didn’t? I felt like we needed to consider all options. I still cry when I think about that time, remembering how utterly heartbroken we were at being in this position, trying to make this impossible decision.

At the time, when we decided to go ahead with the pregnancy, it felt as though we took a flying leap off the highest diving board, with a blindfold on, hoping beyond all hope that we’d make it into the deep end and live to tell the tale. We clung to each other and to the blind faith that it would all be okay… eventually… surely?

You know this story has a happy ending. We made a very considered and heartwrenching decision to keep our baby and to live through some very dark and painful months until the arrival of an amazing light in our world. I cannot begin to express the joy that Nicholas brings to our lives and to our family. Far from a burden to us, he is such a blessing, and I am so grateful for having my heart broken wide open if that’s what it took to welcome him wholeheartedly into our lives. I know now that it was all part of the journey, and that we think of ourselves as the lucky ones. But it wasn’t easy, and I’d be lying if I said it was.

If you are reading my words after discovering the baby you are carrying doesn’t fit into society’s version of ‘perfect’ and you have chosen to keep that baby regardless, I wish you peace and strength. You are a brave parent-warrior, and you have so much joy ahead of you.

If you are reading my words after choosing not to keep your baby following a prenatal diagnosis, I wish you peace and strength. There is no easy decision on this journey of parenthood. We are all just trying to do the best we can, the best way we know how.

“How much energy have you invested in trying to protect your heart from breaking? It’s wasted energy. And worse, it keeps you distant from your depths, your core, your animal humanity. From every one. Every thing. We’re meant to be broken. To shred. Melt. Burst open. Come into compassion and exquisite empathy for every thing.”

~ Melissa La Flamme

Photography by Kathy, Lily-Kate Photography.