When My Infant Daughter Was Declared Brain-Dead, I Had To Make An Unimaginable Choice

Nearly a decade ago, the doctor who had been responsible for my daughter’s care in the paediatric ICU asked me: “Would you consider organ donation?”

My mind struggled to string his words into a decipherable sentence. My husband and I had just been told that our 1-year-old daughter, Rehma, was brain-dead. She was on a ventilator that kept her body functioning, the doctor explained, but once that was turned off, her body would also die.

“I’ll support whatever decision Nada makes,” my husband said quietly.

I stared at my fingers on my lap, unable to summon the will or effort to lift them. I had to do the impossible: say goodbye to my daughter. I didn’t want the responsibility of deciding if another mother had to do the same.

But my husband was right, I thought. I gave birth to Rehma. I could not allow a decision as monumental as this to be made by anyone else. It did not matter that every thinking synapse felt immobilised with shock. I had to muster the clarity of mind to decide.

I spent hours at Rehma’s bedside, reading and rereading the informational pamphlets on organ donation. My primary concern was religious. As a Muslim, I thought that organ donation was discouraged due to the prohibition of any kind of desecration of the human body. But as I read, I learned that organ donation was becoming a less controversial concept in Islam, and the principle of saving a life was generally taking precedence. Most religions take a similar stance.

I read about the dire need for organ donors, particularly from racial minority groups. More than a hundred thousand people are on the national transplant waiting list, and 17 of them die every day. Each organ donor can save up to eight lives.

But even with all that information, the decision was not a binary choice between helping or not helping someone.

If I said yes, Rehma would be wheeled away to a stark operating theatre, where the transplant team would turn off the ventilator after removing her organs. She would take her last breaths there ― without me.

Rehma lay on my chest when she was not even a minute old. She took her first breaths in my arms. If this was the end, I wanted her final breaths to be in my arms. I wanted her to be surrounded by everyone who adored her. I wanted the last thing she felt to be my skin against hers. I wanted the security of my arms to envelop her as she left us. I wanted to carry that final memory of my baby in my arms for every step of the life left for me. I couldn’t have any of that if I said yes to organ donation. I wanted to be grossly selfish, even at someone else’s expense.

I said yes.

I said yes because I imagined a mother like me, sitting by her sick child’s bed, desperately praying for a miracle. That mother would know the chances were slim that the organ her child needed, of the right size, blood and tissue type, would be available. She’d also know that for her prayer to be answered, another child would die. But she’d pray anyway, just like I did for my daughter. I had the power to do for that mother what no one could do for me.

I said yes because very few people die in a way that allows them to become donors: in a hospital, typically with brain death but otherwise healthy organs. Thus, very few people have the privilege of having their final act be one of incredible mercy. I believe in a merciful God, and I had to believe my daughter was chosen for this profound privilege.

I said yes, but not out of a heroic desire to save someone. I was too shocked and grief-stricken to muster magnanimity on that scale. I was acting more on the principle of “do no harm,” rather than “do good.”

I said yes because saying yes felt more right ― less wrong ― than saying no.

Two days later, we had to say goodbye. My husband stroked Rehma’s cheek with his thumb one final time. I whispered the lullaby I had hummed to her every night for a year. My daughter was wheeled away to an operating theatre. She took her last breaths there ― without me.

Rehma’s liver saved a young boy’s life. Her kidneys gave a man another chance at living without pain. I don’t regret my decision. My logical mind relies on the knowledge of those saved lives for some comfort.

However, nearly a decade after I kissed my daughter on her forehead for the last time, I still imagine holding her in my arms, my face tucked into her hair, breathing with her until her last breath. I also imagine the little boy’s mother crying with relief when she was told a liver donor had been found. I imagine the father of teenagers cheering them from the sidelines of a weekend soccer match, instead of being hooked up for hours to a dialysis machine. I am caught between bittersweet gratitude that my daughter is the reason they and their families were gifted with another chance at life, and uncomfortable resentment at the cost our family paid for it.

I can’t yet imagine meeting the recipients of Rehma’s organs. I have thought about contacting the organ procurement organisation to say I would be open to meeting them, but I’ve not acted on it. I am afraid. What if I meet them and discover that resentment overcomes gratitude?

I read the stories of those who have been saved by organ donation ― bright, sparkly, smiling stories ― and I wonder: Why are there not more stories of the people who died and gifted life? It was Rehma’s loss that enabled another family’s “happily ever after.” Their good exists alongside our bad. In fact, their good exists because of our bad.

Pain and relief are linked in ways I cannot fathom, as are life and death. One doesn’t exist without the other. One doesn’t need to balance the other at an individual level. 

I can hold polarity together in a world that insists I have to pick a side. I can simultaneously feel thankful and bitter, or be right and wrong.

That fateful morning in the ICU, a young mother struggled to decide whether her daughter would die in her arms. She finally whispered hopeless, hopeful words: “Yes, we’ll donate her organs.” I wish I could reassure her that with those words, she ensured another’s joy alongside her despair.

Nada Siddiqui manages a charitable fund focused on improving health care access for children. She is writing a memoir about exploring truth, motherhood and her Muslim faith after the death of her 1-year-old daughter. Find her at nadasiddiqui.com.