An open letter to organ donor families

Dear Donor Family,

I am writing to you during the most difficult and darkest time in your life. I’m truly sorry you’re going through this. Please know that my heart is breaking for you.

You may already be coming to the realization that the end is inevitable, or perhaps you are at the beginning stages of the life-changing tragedy that will ultimately lead you to a decision that you will need to make – the choice to donate your loved one’s organs and tissues.

I know how hopeless this situation feels. The frustration that nothing more can be done; the fear of continuing life without your loved one; and the grief that may already be setting in are overwhelming. I know this, because I experienced it firsthand.

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My name is Alyshia and I am a donor family member. My Dad, Malcolm Higgins, was in a single-vehicle car accident in 2010 and sustained a critical brain injury. His eldest child at 24 years old at the time, I was appointed his substitute decision maker. The moment I received the phone call that he’d been in an accident, I knew my life would change forever.

When my three younger siblings and I learned my Dad would never awake from his injury, we chose to withdraw life support. He was six months shy of his 50th birthday.

I remember the day so vividly: the fear, the heartbreak and the devastation were almost too much to bear. I also remember another feeling: comfort. My Dad met the criteria for organ donation. We were fortunate that our father had been very vocal about his wishes – should he ever be eligible to donate, he wanted to do so.

Through his gift, one man received a double-lung transplant; two men each received a kidney, freeing them from the rigorous routine of dialysis; and two more received the gift of sight through his corneas.

In our darkest moments, the thought that something positive could come out of our heartbreaking tragedy provided immeasurable comfort. While our family was getting the worst news of our lives, five other families were getting the best phone call of theirs – their loved ones were getting a second chance.

You may be surprised to know that today, right this minute, there are nearly 500 people waiting for a life-saving organ transplant in British Columbia alone and over 4,500 nationwide. To so many of us, this number is not just a statistic; it represents our friends, siblings, cousins, children, and parents who are all desperately waiting for the gift of life.

For a young BC recipient, Addison, that phone call came just in time. Born with a heart condition in 2011, her parents learned when she was weeks old that she would need a transplant – and soon.

The call for them came on Mother’s Day. In the midst of losing their own child, another family selflessly chose to save her parents from going through the same heartbreak. Today, this beautiful little girl is nearly four years old and living a happy, healthy normal life. You can read more about her journey here.

There are no words to describe parents who lose their children because it’s just not supposed to happen. Tragically, it does and all too often.

My Dad’s father – my grandfather – experienced this. He was devastated to outlive one of his children, but was immensely proud of the legacy his only son was leaving behind.

I can’t even begin to imagine the pain, the anger and the heartbreak of losing a child because I am not a mother. What I can tell you is how it feels to have a family member who is a hero.

When we were told my Dad’s grave prognosis, I desperately wanted to do something – anything – to make him better, but the reality was he could no longer be helped. It broke my heart to think of all of the things he was going to miss out on.

He won’t be there to walk me down the aisle at my wedding and I will never have a memory of him beaming with pride and kissing me on the cheek as his little girl one last time. He’ll miss the grandchildren my siblings and I will eventually have and there will never be another Christmas where we’ll sit down as a family, reminisce about years gone by and make new traditions. Our memories are now all we have – and the knowledge that my Dad has given a future to others.

For three families whose fathers, brothers, husbands and friends were saved through his selflessness, they will have these things for many years to come. In fact, I know through correspondence with my Dad’s double-lung recipient that he was able to proudly walk his daughter down the aisle without an oxygen tank in tow and visited his family out west for the first time in 10 years. He can bounce his grandkids on his knees, travel with his wife and walk up the stairs in his home without gasping for air. (By complete flook, my sister and I met him at an organ donation event – he’s such a lovely man.)

An Enviable Legacy - My Dad's Story of Donation

Making the choice to donate is not a difficult one, but one made during the most difficult of times and I know this firsthand. Donating your loved one’s organs and tissues will never take away the pain of losing them, but it can provide you with some solace in your time of overwhelming grief.

One single donor can potentially save up to eight lives through organ donation. Imagine sparing other families from losing their loved ones, allowing them to see another birthday, another Christmas, even just another day.

For those waiting, time is running out. Without transplants, the people on the wait list will inevitably die.

I respectfully ask that in your time of grief, you consider the life-changing and life-saving gift organ and tissue donation can have.  

Your choice will not only impact the immediate future of your loved one’s recipients, but will create an eternal legacy.

My dad always used to say his four kids would amount to greater things than he could, but I beg to differ. There is no greater gift you can give someone than life itself and he achieved that three-fold.

The man whose gift saved three lives and gave sight to two more; the man whose story has been shared in three countries and the man whose donation inspired his four children and countless others was my father and for that, I couldn’t be more proud.

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Please, register your consent, talk to your family and speak to your loved one’s health-care team. The decision you make will change lives forever – including your own.

With sincere gratitude,

A Proud Donor Daughter

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An Enviable Legacy – My Dad’s Story of Donation

“Your father will never wake up.”
On a hot July afternoon in a cramped family meeting room at Sunnybrook Health Sciences Centre, those six words changed my life forever.
Only five days before my Dad, Malcolm Higgins, had been in a single-vehicle car accident. He sustained a critical brain injury and was in a coma. At first, my siblings and I were hopeful. Over the course of the next few days, we quickly became familiar with diffuse axonal brain injuries, EEGs, and how the Glasgow Coma Scale worked.
When the doctor delivered the grave prognosis, I didn’t believe him. Surely, my Dad would recover. He was strong, he was healthy – he was just 49 years old.
By day, he was a paralegal and professor at Everest College. He was well-respected, passionate and intelligent.
By night he was a rock star, singing in one of the best AC/DC tribute bands in the country. He was incredibly talented musically and tried as hard as he could to pass it onto my three younger siblings and I.
As youngsters, instead of reading bedtime stories, he sang to us. The four of us knew the words to AC/DC, Steve Miller Band and Guns and Roses before we could recite the alphabet.
He was full of life, energy, and ambition and would never have wanted to live hooked up to machines indefinitely, completely incapacitated. We made the decision to withdraw life support, but I never imagined at 24 years old, I would be the one signing the papers to do it.
Shortly after we received the news, my siblings, my dad’s father, sister and I were approached by an organ and tissue donation coordinator who talked about the possibility of donating Dad’s organs.
The choice to donate Dad’s organs was an easy one – he had always discussed it with us and had registered to become an organ donor should the opportunity present itself.
For us, it wasn’t a difficult decision to make, just a decision made during a difficult time.
The night we let my Dad go, three of his four kids were by his bedside, along with his older sister. We brought in our iPod, played AC/DC and waited. In order for him to be eligible for donation, he had to pass away within two hours of being removed from the ventilator.
The wait was agonizing and as my Dad slowly slipped away before my eyes, I thought about the irony of the situation: he was in one of the best hospitals in the country and the very people who we had hoped would save him were standing around waiting for him to die. It just didn’t make sense.
Thirty-three minutes after we began the process, my Dad passed away. His final heartbeat was perfectly in tune to the last note of Thunderstruck, which was always the finale at his shows.
On July 14, 2010, seven days after his initial accident, I made the most difficult phone call of my life and told my grandfather his only son had taken his last breath. It gave me a small bit of comfort knowing that simultaneously, three other families were receiving the best news of theirs.
I knew donating his organs was the right decision and it meant we were honouring his wishes. I knew lives were going to be saved because of him. What I didn’t appreciate was the profound the impact his donation was going to have on my own.
A few weeks after my Dad passed, I read an article in the Toronto Star about organ donation. I was amazed the impact this gift had on the recipient that I reached out to the reporter to thank her for the piece.
Two months later, she emailed and asked if my family would like to be featured to talk about the donor side. I couldn’t let the opportunity pass.
Together with my sister, we told my Dad’s story: how he told us his wishes in advance; that he carried around a blank donor card in case he met someone who wanted to consent on the spot; and about the young child with leukemia he helped save by donating bone marrow so many years prior.
Five months to the day Dad passed away – December 14 – I received the most incredible Christmas present: letters from Dad’s double lung recipient and two of his family members. Trillium Gift of Life Network facilitates anonymous contact between recipients and donor families. Neither side is obligated to write a letter or reply to anything they’ve received but it gives an opportunity to reach out if you wish.
Here was his letter to us:
Dear Donor Family,
As I begin to write this letter of thankfulness, I have mixed emotions. I am so very sorry for the loss of your loved one who has so generously donated their lungs for transplantation.
I am so grateful to be the recipient of your loved ones generous donation. My quality of life has improved dramatically, as has my wife’s – my caregiver.
Prior to my operation, I had been on oxygen since 2003. Almost immediately after my operation, I did not require oxygen for life support.
I am so grateful to you, the Donor Family, for donating this precious Gift of Life to me.
Now I will be able to continue my life in good health with my wife, family and friends.
From a Grateful Recipient 
For a long time, I was angry my Dad had been taken from me. I was frustrated because I felt he had so much life left in him. I was angry at him, at the accident, at fate, at everything surrounding his death.
Getting these letters really touched me and proved to me what I knew all along: my Dad did have a lot of life left in him. His lungs give every single breath to a man, allowing him to hug his wife, kiss his daughters and walk up the stairs without gasping for breath. His kidneys saved two other men from the rigorous routine of dialysis and his eyes have given sight to two others.
After receiving the letters, I knew I had to become involved and continue telling his story.
I began volunteering with Trillium Gift of Life Network. The first year he was gone, his story was featured in several newspapers, placed second at a film festival in California, and was shared at more than 10 different speaking presentations. 
We also finally gathered the courage to write back to his double-lung recipient and within two weeks had another set of letters from him. This time, he shared he was visiting his family for the first time in Alberta in 10 years and that he was finally able to sing like he used to. He and my Dad had more in common than we realized.
A year-and-a-half after my father’s death, I was invited by a fellow volunteer, who was a recipient, to Toronto General’s annual lung transplant party. Merv thought it would be appropriate for me to learn about another piece of the donation puzzle – the wait list.
There were about 100 people at the party – recipients, family members, those waiting along with staff and physicians. Merv was walking my sister and I around the room, introducing us to nearly everyone. Just when I thought we were finished, he introduced us to a man named Richard. He was a short, older gentleman and looked to be about 70 years old.
He indicated he was a recipient – his transplant was July 2010 – and had written to his donor family. My sister and I were touched and thanked him immensely. After all, the reason I became involved was because the recipient had the courage to reach out to us a year before.  
“Do you know much about your recipient, because I know a lot about my donor”, he said to us. “I know he was a former police officer, he had four kids and he sang in an AC/DC band.”
For a moment, I thought I might pass out. My sister started crying as Richard slowly connected the dots. His chin began to quiver and his eyes filled with tears.
I managed to find my voice and said, “you have my Dad’s lungs.”
My sister and I with Richard.
Tears running down his face, he grabbed mine and my sister’s hands and pulled us through the crowded room to where his wife was standing.
“Joan, meet our donor daughters,” he said. She, too, couldn’t believe it.
Through our tears and hugs, we quoted the letters back and forth to make sure Richard really was my Dad’s recipient. After a couple of minutes, there wasn’t a doubt in our minds it was him. As it turns out, he and his wife live 20 minutes from my house.  We’ve stayed in close contact and even had the opportunity to meet his two daughters, who are my father’s age.
Since meeting Richard in December 2011, I’ve continued with my volunteer work. I wrote an article for the United Kingdom’s Live Life Then Give Life organization, who featured my Dad, a Scotland native, on their website. I started a group called the York Region Gift of Life Association to help raise the low registration rates in our community. In less than a year, we’ve attended or participated in more than 50 events and presentations and recruited a force of 30 amazing volunteers. We also spearheaded the largest organized registration drive in Ontario’s history, supported from all three levels of government. I’m humbled to be a very small part of what this inspirational group accomplishes – they truly are incredible.
Dad always said his four kids would be easily able to surpass his achievements in life and that we would amount to greater things than he ever could. I beg to differ.
There is no greater gift you can give someone than life itself, and he’s done that three-fold.
The man whose selfless decision saved three lives and gave sight to two others; the man whose selfless decision has been featured in three countries and dozens of articles; and he man whose selfless decision motivated his four children and countless others was my father and for that, I couldn’t be more proud.
April 22 to 26 National Organ and Tissue Donation Awareness Week. Right now, there are nearly 1,500 people waiting for a life-saving transplant in Ontario. Please, please register your consent at beadonor.caand speak to your family about your wishes.