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Our son was destined not to live long

But his brief life left us forever changed and blessed

From Tuesday's Globe and Mail

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"We lose so many babies here at Mount Sinai Hospital," the loving nurse said to my husband and me the night our son died.

So many mothers were experiencing the same grief and pain as me. I was among the many.

Our son came into this world and left it on the same day. His life left me forever changed as a mother and a woman.

It was a sunny afternoon. My 18-week ultrasound detected an abnormality in our child's heart. A repeat ultrasound found the same thing. It was time to go to the Hospital for Sick Children for a fetal echocardiogram, an ultrasound of the baby's heart.

The cardiologist's only words were final: "The senior cardiologist will meet with you. Your child's heart is abnormal."

Panic seized me. I didn't know what to make of those words. Heart abnormalities were unheard of in our families. Our daughter was born perfectly healthy.

When the senior cardiologist came in, I knew the news would be life-changing. His handsome face looked so pained. Our son was thriving in my uterus, and his heart and lungs were functioning perfectly. But once outside the warmth of my womb, his heart and lungs would not operate normally. He was going to be born blue, without oxygen to his lungs, unable to cry or breathe.

His heart was so broken that the skilled surgeons at Sick Kids could not repair it, only maintain it. Our baby boy, once born, would need immediate heart surgery. If he survived that, and his chances were modest, then he would have to endure numerous heart surgeries throughout his young life, with the likelihood of death befalling him between five and 10 years of age.

I sat numb and still. My husband crumpled over and wept. "This will be hard on your marriage," we were told. "You can choose to carry this baby to term or you can terminate."

I was struck by fear. What was I to do? Could our marriage handle this? Was I a coward and a horrible mother for not wanting to raise a sick child? If we chose to carry him to term, how would our two-year-old daughter fare in all of this? If we chose to terminate, could I live with myself or my husband? What did the spirit of my unborn child want? What did I want?

I was drowning in fear and pain, and yet a gentle voice within me, subtle and patient, reminded me that all unfolds as it should. This, too, was happening for a reason, although I could not fathom what that reason was.

That night, I wept. I sat in silence and in meditation, seeking guidance and courage. My husband and I came to a decision that felt true. We decided to carry our son to term.

My pregnancy was full of varied emotion, from peace and faith to fear and loneliness. My journal became my place of solace and refuge. When I felt afraid and sad, I wrote. When I felt peace, I wrote. When I felt brave, I wrote. There was so much grace in accepting what I felt and letting it come through. The intensity of emotion never wavered.

Thus began a diary of letters to our unborn son, and a journey of healing for me as I nurtured the life in my womb and our son's broken heart.

On Saturday, Nov. 1, Michael was born, weighing 7 pounds 13 ounces. He was not blue. He was pink and beautiful. Perfect. He cried a thunderous cry.

After his 14-hour descent, the nurse held him up for me to see. Our eyes met and then he was whisked away.

Hours passed and Michael was taken to Sick Kids. We learned that he wasn't doing well. They had lost him but revived him. He was now on life support.

Our son's heart was more rare than they had foreseen in the echocardiogram. He suffered brain damage from his short loss of life. The cardiologist told us they would operate on Michael's heart the next morning, but he would suffer and not fare well. "We ask that you consider taking him off life support. He is very sick and will not do well in surgery," the cardiologist gently told us.

Another life-changing decision was upon us. "He celebrated life in my womb," we reminded each other. "He did not come here to suffer."

I held my son for the first and last time as we watched him grow limp, his spirit leaving his small body. Michael was born and died on the same November day. Grief washed over me and remained my constant companion, but alongside it came a calm that nurtured my heart.

Now, months later, my heart continues to feel peace and grace — a grace that comes with the humble awareness and acceptance that there is a gift in all of our life experiences, and that in every darkness there is a blinding and warm light.

Our short-lived son graced our lives, mine especially after carrying him in my body for what felt like a year. He has left me forever changed and blessed. Michael, our shining being, is our son and our daughter's brother. He is simply in a different form, an angel celebrating life, love and courage.

Jennifer Phenix lives in Mississauga.

Illustration by Rachel Ann Lindsay.

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