My son Matteo was born weighing just under 3 pounds and crying faintly. He was baptized with holy water from Lourdes, France, and anointed with chrism oil. A nurse bathed and dressed him. In 2015, for two of the most precious hours of my life, my husband and I cradled him. My children held his tiny fingers. We sang to him. And then he went peacefully to Heaven.
I was in the dark shadows of the ultrasound room when I first heard the words “incompatible with life.” I didn’t understand. He was already alive. I could see his tiny heart beating on the screen. What followed was a flurry of phone calls and doctor appointments and second opinions and more ultrasounds, all of which confirmed the news that my son had Trisomy 18, a life-threatening condition that is usually fatal before birth or within the first year of life.
I was devastated. But I also knew without even the slightest doubt that I wanted to give my baby every chance modern medicine could provide. I underestimated, however, how hard it would be to find a doctor who supported my choice.
I already made my choice
The profession certainly made it clear that it supported the choice to terminate. I was still reeling from the ultrasound when the doctor who delivered the news began pressuring me to have a possibly risky and invasive amniocentesis – a procedure to remove some of the amniotic fluid that protects the baby – just hours later. When I declined, the doctor pressed harder, saying further testing was needed to have more “choices.” Instead, that day my husband and I gave the baby his name, which is Hebrew for “gift from God.”
In the weeks that followed, a parade of doctors pushed a slew of tests on me. For more choices – that was always their justification. Never mind that I had already made my choice, they only seemed determined to change it. Not once did I hear the words I so craved: “Don’t worry about it. What do you want to do? I will help you.”
At least not until, through the intervention of our parish priest who visited and sat with me weekly, we were connected with Dr. Lucy Bayer-Zwirello, a high-risk specialist and the chief of maternal-fetal medicine at St. Elizabeth’s Medical Center in Boston. “Your baby is beautiful,” she said as she looked at the ultrasound screen. “I am happy to accompany you,” she said. “Let’s see what the baby will do.”
Children with special needs are a gift: I was pressured to abort my children. For my first baby, I gave in.
It was because of her compassionate care that one of my deepest desires was fulfilled: to meet my baby alive and baptize him before he died. At 34 weeks, Matteo was no longer gaining weight, and she induced me so that he could pass in the arms of his family rather than in my womb.
The death my baby was worthy of
It may sound strange to think of the death of a newborn infant as beautiful, but it was. Matteo died surrounded by loving family and in the care of medical staff that helped to give him the dignified death he was worthy of. And I, as his mother, experienced the grief of his death feeling fully supported. Matteo’s diagnosis and, ultimately, his passing opened a new world of community and unexpected friendships to our family.
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People desperately wanted to be there for us, to support us. My husband still cares for the plant that one family from my children’s school brought us. And I still cherish the photographs from Matteo’s birth, taken by a mom I met at the playground who I later learned was a photojournalist. The beautiful photos she took that day are one of my greatest treasures. And if you were to see them, you would see a room brimming with sunlight and happiness. Because, strange as it may seem, those few hours with Matteo continue to bring my family joy and open new dimensions in our life.
My husband and I, for example, went on to have three more children. I’m not sure we would have had so many, but Matteo opened our hearts to the delicate and precious gift that is life in ways we could never have imagined. We take our five children to visit Matteo’s grave every week. The children bring toys, and every visit brings new questions about life’s greatest mysteries. Why is Matteo’s tombstone different than the others? Why did that person live for so long, asked my daughter on a recent visit pointing to a tombstone, and Matteo for so little?
Supportive care means the world
They are questions that get to the core of human suffering and the reality that there is so much of life we cannot control or escape. We knew immediately that there was nothing we could do to save Matteo. We could have eliminated him. But was that a real solution?
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So many women facing a terminal diagnosis do so alone. They suffer greatly, unjustly deprived of a supportive community. Too often that injustice begins in the doctor’s office, where women are berated with so-called choices but in reality left feeling as if they only have one. I had to fight for respect for my choice to bring my terminally ill baby into the world, and until I found truly supportive medical care, the doctor’s office was the only place where I did not feel sustained.
Women deserve better than false choices shrouded in medicine. Matteo’s story is a testament to the truth that suffering and grief can deepen our love for one another. It only took one doctor willing to accompany me to open a world of love. It should not be the exception to the norm.
Monica Canetta is a high school Italian instructor in Boston and a former science teacher.
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This article originally appeared on USA TODAY: Pregnancy after terminal diagnosis: I was pressured to choose abortion