In lieu of an abstract, here is a brief excerpt of the content:

  • The Value of a Life
  • Monika Jaquier

What makes the value of a life? The number of years it lasts? The number of things accomplished during this life?

One day, I was asked to decide.

"I am seriously worried about the head," said the ultrasound specialist, "your baby has anencephaly, the most serious birth defect of the brain."

In my head, I see the movie of our family's life: three small children who already draw a lot of attention and a disabled baby, appointments with doctors and therapist, a car big enough for the future wheelchair.

"And now?" I'm sure that he will now tell me about the surgeries and therapies that will fix my baby. "Your baby will die shortly after birth. There is nothing that can be done. You can still abort if you wish to."

What? How can this be possible? Miscarriages are a reality I've experienced twice, but once the fateful mark of 12 weeks passed, everything should be fine, shouldn't it? I just saw my baby at 22 weeks wiggle around in my womb, saw his heart beating, and over the appointments of the past weeks, I had been able to see my baby's growth.

I'm grateful I don't have to choose now in this moment of deepest shock. That the decision had already been made before this pregnancy even began, when my husband and I had discussions about what we would do if one day we got a poor prenatal diagnosis. While we were unaware of all the possible health issues, we made the fundamental choice that no matter what would be discovered, we wanted to value the life of each of our children.

I decline the doctor's offer and tell him that I want to continue the pregnancy to give our baby every possible day of life and love. He accepts my decision without arguing but gives me his phone number to call whenever I'd have questions.

Not everybody respects our point of view. Two weeks later, I'm back at my OB/GYN's office; in the meantime, he got the report from the specialist. He tells me that this pregnancy should not last a day more, that I should stop it and start again with another baby that is worth it. In his eyes, my baby has no more value than an earthworm. He must never have heard of non-directive counselling . . . The only positive aspect of the appointment is that I learn that I'm carrying a little girl.

It's not the last time I have to find answers to the question, "What is my baby's life worth?" Family, friends, health care professionals, and even people I've only met a few instants ago "know" what I should do. I realise nevertheless that the opinion of thirds has not much importance, as we will have to live the rest of our lives with our decision, not them.

My daughter did not change with the diagnosis. She had almost always been like that, as this birth defect appears in the first weeks after conception. What changes is the way she's seen now. To my husband and me, she's our beloved daughter, growing and developing in my womb, reacting to our voices. To our children, she's their little sister who will stay for just a short time. To others, she's just worthless.

During the first days after the diagnosis, I struggle with the fact that I have to know about our daughter's upcoming death, with the responsibility for my baby's life, and the judgement of people around us. Wouldn't it be much easier to ignore everything and just enjoy the pregnancy? But with the weeks passing, I become increasingly thankful for the opportunity to prepare and live mindfully during the time of our daughter's life.

So we decide to make the best of every day we have with her.

First, she gets a name: Anouk.

We try to bond with her through little things such as reading books to our children before they go to bed, as well as through special trips like...

pdf

Share