Nothing can prepare you for a change of life when your child dies. Kenneth and Sharon Abela tell Adriana Bishop how they are “moving with” the loss of their son Drew after donating his organs to save seven other people.
This is a story about life after death, of hope after despair, of courage and bravery beyond compare. It is a story that only its protagonists can relate, and we must listen and reflect with an open mind and a willingness to take their lead and follow in their heroic footsteps. For they are heroes, but so could we be.
When Drew Abela’s mother dressed her then two-year-old toddler in a Batman costume, little could she imagine what a superhero her son would become after his death. Drew died on Thursday, June 9, 2016, at the age of 20 from a brain aneurysm, but thanks to his parents’ altruism and quick thinking, he saved the lives of seven other people when his organs were donated.
Now, his parents, Kenneth and Sharon, are leading a nationwide campaign to encourage more heroes like Drew to register as organ donors.
Even though Drew passed away three-and-a-half years ago, his infectious smile and warm personality still shine in the Abela household. There is never a moment in the family’s life when Drew is not included. On birthdays, his sister Bobbie makes sure she writes a card from Drew; at special occasions, a place is set at the table for him; and even Bobbie’s graduation cake featured the Batman symbol, which has now become associated with the real-life hero that is Drew.
A portrait of Drew painted by Anna Galea takes pride of place in the hallway surrounded by countless photos, trinkets and little gifts in memory of happier days.
More photos adorn the walls showing Drew together with his many friends and beloved family. A small plaque emblazoned with the word “#legend” refers to a running joke between Drew and his cousin, youthful banter that now reflects Drew’s ultimate act of heroism and legacy.
They ran two tests and that is when they actually confirmed that there was no more hope
His bedroom remained untouched for almost two years, but now doubles up as Sharon’s study, a place where she feels closest to him; where “sometimes I smile, sometimes I cry, going through a roller coaster of emotions even within the same minute.”
Sharon recalls: “Our son was the gentlest person, almost six foot tall, full of life, very lovable, very loving, soft-spoken with a great sense of humour, which I really miss.”
She and Kenneth were away on holiday in Sicily the day Drew was taken ill. After a frantic wait for the catamaran, they returned to Malta at around midnight. By 8am the following morning, the family were given solid indications that he was probably brain-dead.
“They ran two tests and that is when they actually confirmed that there was no more hope,” recounts Sharon. “At that point, the question is raised as to whether we would like to donate his organs. I believe I actually pre-empted it. At that moment, you become so frantic, it is like an out-of-body experience. My soul was crying out ‘save anything’. It was a mixture of wanting him to remain here and at the same time helping others.”
'Signing the consent form wasn't easy'
Sharon and Kenneth had been registered as organ donors since the early 1990s and their children had also discussed the option of registering. While it was an “automatic” decision for the family to donate Drew’s organs, signing off the consent form was not at all easy. Sharon confessed she found “the actual signature too heavy” so she asked her husband to do it.
“It was the most difficult signature of my life,” admits Kenneth, “but the most rewarding one.”
And that is one of the reasons why the Life After Drew campaign was conceived.
The topic of organ donations remains a sensitive one and pretty much taboo.
“The reality is that there is not enough awareness on the subject of organ donation in Malta. If a person is registered as a donor, it means the individual wants to do this, and it is not up to the next of kin to have to face the psychological trauma afterwards and the dilemma of doing the right thing. Of course, if you know the person well enough, your instinct would reflect their wishes. However, the more education there is about the subject, the more people would accept the need for organ donation,” says Sharon.
Last year, a petition was raised by Michel Camilleri to change the local organ donation registration process from the current opt-in system to an opt-out.
Countries that have introduced such a system see higher donor rates than those with an opt-in system. Several European countries, including Austria, Italy, Belgium, France, Norway, Spain, the Czech Republic, Finland, Greece, Hungary, Luxembourg, Poland, Slovenia, Sweden and Turkey, have long used opt-out laws, also known as “presumed consent”, to increase the pool of potential donors.
The UK government is planning to change to an opt-out system by April 2020. In Malta, there are currently 14,216 registered donors, which amounts to just three per cent of the population.
According to a Council of Europe report drawn up on the occasion of the European Day for Organ Donation and Transplantation [this year to be marked on October 12], there are thousands of patients who “suffer in silence”. In 2017, more than 144,000 patients in Council of Europe member states were on a waiting list for an organ transplant, an increase of 10 per cent from 2013.
While 43,000 patients received a transplant, some 50,400 were added to waiting lists, which is the equivalent of “nearly six new patients added every hour across Europe”. Shockingly, “an average of 18 people on waiting lists die every day” due to the “chronic” lack of organs, tissues and cells available.
Kenneth and Sharon themselves have differing points of view on this issue. “I would still go for the more altruistic opt-in because that would mean it is not just about organ donation,” says Sharon. “If we nurture the younger generation to be altruistic, it would be better, so it is not imposed on you. On the other hand, an opt-out system would mean that people will be saved from that difficult signature that Kenneth had to do.”
Kenneth has changed his mind about the system: “I used to say it should be opt-in as there would be more altruistic thought behind the decision. But now, I believe that it is such a big problem that it is insane to let people die and let people suffer just for this. I think the fact that you are saving lives should prevail and I am all for an opt-out system,” says Kenneth.
The campaign, which has taken local media by storm, was intended to encourage people to talk about organ donation, to become more aware of the issues and be educated about the many misconceptions that still exist.
It also served to honour Drew and people like him, who have selflessly and courageously given the ultimate gift to others.
'Our family shrank, but also expanded'
“When our family shrank after the loss of Drew, it actually expanded as we now have a kind of extended family,” says Sharon, referring to the recipients of Drew’s organs.
While the law safeguards the privacy and anonymity of donors and recipients, it did not take much on tiny Malta for two of the recipients to make themselves known to Drew’s family. Following a newspaper interview published soon after Drew’s death, the family were contacted by the recipient of his heart.
“I received a message from the husband of the recipient, and he told me he wanted to meet us,” says Kenneth. “The timing was not right for Christine, the recipient, to meet us at that point as she was still recovering, but we met her some time later.
“The relationship has been an amazing one. Christine is always saying how much she loves Drew and how close he is to her. When we first met her, our emotions were all over the place, both hers and ours. Sharon had mixed feelings because it was still new, but the more we got to know her, the more we realised how special she is.”
An emotional Sharon talks about hearing his heart beating inside her and even seeing it. “Initially, it was difficult because the reality of what had happened hit me again. There was an overwhelming feeling of dilemma, and at the same time, a new kind of love.”
The family have also met the recipient of one of Drew’s kidneys, who, thanks to the transplant, is now back to leading a normal life. It is understood that Drew’s cornea was also transplanted in Malta while the rest of his organs were sent to the UK and Italy.
Drew’s legacy also lives on at the Intensive Therapy Unit at Mater Dei Hospital in the form of The Drew Room, which provides overnight accommodation facilities for patients’ relatives and was sponsored by Rotary Club La Valette.
But it is at home and in the heart of his family that Drew continues to live forever. As the campaign gathers momentum and honours the heroism of organ donors like Drew, his family continues to work tirelessly to raise awareness about organ donation, channelling their energy and grief into something positive.
However, they point out one final taboo that needs to be addressed related to this issue: grief itself.
“There is a taboo on grief,” explains Kenneth, who openly confesses to me that only a few hours before the interview, he was sitting in his car crying. “We hide a lot of our emotions and try to show everything is not OK, but that life has to go on. I don’t like using the words ‘move on’ but I prefer ‘move with’ the loss.”
Sharon continues: “People think that bringing up the subject of Drew will stir up emotions, and that possibly we might break down. But the reality is that when people speak to us about Drew, we love it. We keep him alive in that way. Our worst fear is that he would be forgotten. People speaking to us about Drew and raising awareness about organ donation is healthy. We enjoy speaking about him. We cannot forget and move on. It’s not like that. Especially when your son or daughter passes away, it is even more pronounced. You are expecting your parents to pass away, and you are geared for that, but nobody will really prepare you for something like this, your son or daughter being snatched away.”
Every Thursday for the past 37 months [and counting], Sharon has posted a message to Drew on her Facebook page, a cathartic exercise that has helped her address her grief, but has also helped several people deal with similar traumas.
“These posts help me to purge my grief and they also honour my son. I cannot bear it that he has been erased from the face of the earth. I believe in using creativity to cope with personal tragedy. It doesn’t cure you, but it certainly has helped me a lot. Trying to see this tragedy from a positive perspective reminds me that there is positivity even when I am really down. I have gradually trained myself to search for some positive meaning. My posts always start with a heartbreak, but end with a positive outcome. I always try to find one.
“In the beginning, the posts were like poems written directly to Drew. There were a number of videos I made and other generic posts, which I used for my own catharsis. They helped me to understand, to vent my anger, my pain, but they always have a positive message. I received a lot of feedback from people telling me how the posts helped them appreciate what they have and helped them to cope. These posts help me understand myself better; they help me to move without Drew in a dignified manner.
“If I were to look at all the posts in chronological order, I would say there was a development. In the first ones, there is a lot of pain. The pain is so deep. It is a good exercise because somehow you need to release it; you need to let it out and some form of creativity is beneficial.”
Here Sharon shares post number 120, which she published on September 27, 2018, 120 weeks after Drew’s death:
“If it were not for the existence of the mental ability which provides me with the capacity to revisit past experiences, I would otherwise be pain free.
If it were not for the fact that revisiting the past is equally as painful as it is rewarding, I would otherwise be perfectly happy.
If it were not for the fact that each and every one of those memories are progressively becoming more distorted in direct proportion to the passing of time, life would otherwise be always beautiful.
If it were not for the missing piece of the puzzle, that had so gracefully and perfectly fit to complete the picture that took us 26 years to paint, life would otherwise be absolutely perfect.
If it were not for the impossibility for that puzzle piece to be replaced, my life would otherwise be complete.
If it were not for the pain that I bear upon remembering, I would not be reminded of your love which I had the privilege and abundance of for over 20 years.
If it were not for this same love which like today’s setting sun penetrated through the dark Bidnija clouds, my heart would glow with everlasting joy and serenity.
If it were not for the precious memories of you my darling Drew, my life would not be half of what it is today.
If it were not for my memories, I would be a different person.”
A second chance
“My name is Christine Grixti. My own heart was inside me until I was 42 years old. On June 10, 2016, I was given a second chance to live with Drew’s heart.
Ten days after the transplant, I celebrated my 43rd birthday thanks to a very strong heart, which is still beating inside me today.
I consider myself very lucky and blessed to have had a second chance to live and care for Drew’s heart. I lived half of my life with a sick heart. I still managed to live ‘normally’ albeit with a lot of limitations.
In my 20s, I was diagnosed with Arrhythmogenic Right Ventricular Dysplasia, a rare form of cardiomyopathy in which the heart muscle of the right ventricle is replaced by fat and/or fibrous tissue. The right ventricle is dilated and contracts poorly thus weakening the ability of the heart to pump blood.
It was a shock as I had to change my whole lifestyle. I had to undergo several tests and treatments to find the best way to stabilise the rhythm of the heart, which was worsening at a slow pace.
Thank God I found the love and support of my close family and then my husband Charles. He was determined to walk with me throughout this journey and eventually married me in 1999.
In 2007, I lost my father and his death had an impact on my heart. I had to be implanted with an Implantable Cardioverter Defibrillator [ICD] to prevent a sudden death as the heart was getting weaker.
Four years later, my beloved mum died in a most tragic way and that was the last blast to my heart. I had a heart failure. I needed a heart transplant.
However, a severe infection from the ICD leads leading to the muscle of my heart was preventing me from being placed on the transplant waiting list. I had to be treated for the infection immediately. It was risky to operate. Oral and implanted antibiotics were not enough. In 2013, I was flown to Pisa for an operation to remove the infected leads from the muscle of the heart.
It was a very difficult time for me. I was still mourning my parents; I was living in another country with my husband and undergoing two operations in one month.
Back in Malta, cleared from the infection and implanted with a new ICD, consultant cardio-thoracic surgeon Alex Manché agreed to put me on the waiting list for a heart transplant.
The long journey brought me to the big day – the day that gave me a hope to live, but yet filled me with anxiety knowing that the waiting time might be days, months and even years and that, in the meantime, I was dying. My heart was three times its normal size and needed to be changed.
The limitations to live ‘normally’ increased drastically. It was difficult for me to climb the stairs, enjoy a nice walk with my husband, do basic housework, such as making the bed or picking something up off the floor. I also had a light stroke and I was not allowed to drive.
I was living day by day, worsening day after day; seeing myself drifting away from my loved ones, but still feeling hopeful that my prayers would be heard.
And my prayers were heard. After three years of waiting for a healthy heart, the longest and toughest years of my life, on June 9, 2016, at 2pm, I received that long-awaited phone call. Although I always thought I was ready for the call, I never imagined how I would react until it came. That short telephone conversation was the longest and most heartbreaking one. My heart could not take it. The emotions I felt were intense, the heart rhythm was going nuts and the ICD kicked in and gave me shocks. I was being saved by the shocks. That was terrifying and so frightening.
I had experienced those shocks a month earlier during a graduation ceremony. My heart was too weak to take any sort of emotion and I was passing out on the floor in front of my husband, classmates and tutors. This time, I knew what I would be going through in the next few minutes. I was alone at home and I had to find the strength to call my husband, who was at work, to come for me and take me to hospital immediately.
So many thoughts were going through my mind at that moment. I was very anxious that my heart was reaching its end. No, not now! There might be a matching heart. I need to go to hospital. I was becoming tenser when, for a second, the thought occurred to me that someone else must have died and he or she would be saving me. I prayed for my parents to be with me and calm my heart down until I called my husband. I was helpless. I was giving up just a few hours before I actually had the chance. The shocks stopped and I called my husband.
A few minutes later, I was rushed to hospital in an ambulance. Tests were carried out to ensure that all other vital organs were stable enough to function without a heart for a few minutes during the operation. The results were good, and I was to have the heart transplant the following morning.
The medical staff made it possible for me to keep calm during that night as, emotionally, I was not doing well. I had mixed feelings. Part of me was happy to be waiting for a new heart, however, I was feeling sorry for the person who passed away and his or her family.
My husband Charles and my brothers Jesmond and Norman stayed with me throughout the night, and the following morning, other members of my family joined to wish me good luck. Everyone wanted me to be happy and to live a better life, but everyone knew that the operation was a major one and I had a very high risk of not making it.
Just before I was led into the operating theatre, we all prayed together with the priest. I kissed everyone and promised them that I would be seeing them, but next time, with a stronger heart.
Waking up from the induced coma on Monday evening, I found myself hooked to wires and machines. The operation was a success thanks to Mr Manché and his great team. I was alive. I was feeling a heartbeat after so many years. I was feeling weak, but strong enough to keep going. The staff at the Cardiac Intensive Care Unit were amazing, full of enthusiasm and dedication. I was monitored round the clock for seven weeks.
During my recovery, I had plenty of time to think about my new life; to understand what was going on inside me and my thoughts fell on my donor and his or her family, who actually saved my life. Part of me wanted to know more about the donor, but another part of me was keeping me away. I was still too weak to go into the grief of the loss of a person.
At the time, I was feeling confused about whether I was going to accept the heart of someone I did not know and whose body is no longer on earth.
The person has a family. I was thinking about this family. I had lots of questions. Should I thank them? What would their reaction be? Am I strong enough to be faced with such a situation? Are they strong? All these questions were not helping me recover from the transplant, so I was encouraged to forget about them until I was fully recovered.
Unfortunately, a few weeks after being discharged, I had some complications and I was back in hospital for another seven weeks. During that second stay, I had time to read more and I came across a newspaper article about the parents of a young man who had died in June and had donated his organs. I immediately understood that this was my donor. That was so emotional.
I asked my husband to get in touch with the family and thank them for their enormous gesture. I was not yet ready to meet them at that point, but at least we would have thanked them and put their mind at rest that their beloved son’s heart was still beating.
Charles communicated with Drew’s parents through social media while I was still in hospital and met Kenneth one Sunday morning. After the meeting, he came to see me and, with tears rolling down his face, he told me more about my guardian angel and superhero Drew and his loving family Kenneth, Sharon, Bobbie and her fiancé Wayne.
I cried my eyes out hearing about it all, and to learn that Drew was only 20 years old literally broke the heart I was carrying – his heart. I was alive at 43 thanks to his altruistic gesture to give his organs.
Why me? Why Drew? So many questions… So many sleepless nights… I had envisioned Drew in his teenage years. He was the most handsome guy I had ever seen. I felt so beautiful with his heart beating inside me. Everyone commented that my face looks different, with more colour – of course, Drew was gorgeous and that was reflected on my face.
In October, four months after the transplant, I was ready to meet the family. No words can truly explain the feeling when I saw them for the first time, especially when I hugged them. My heart was beating so fast, but now it was a healthy heart, so it could take emotions. That was the first test on the heart after the transplant – the emotional stress of meeting his family.
I cried. We all cried, especially when hugging Drew’s mother, Sharon. The bond is there; I can feel it. We both feel it. We have something in common – the love for Drew. I gave them my word that I would take care of Drew’s heart until the end and to love and praise him forever. What a noble gesture. Out of tragedy and sorrow, they found the strength to save others. Drew, Kenneth, Sharon and Bobbie are true heroes.
Everyone is afraid of dying. We never talked about death. We all try to avoid the subject because it is very sad. There is no space for someone to sit down with his family and express the wish on his afterlife. But the discussion has to start at home.
Parents write a will to put their close relatives’ minds at rest that when they pass away their loved ones are given what they deserve. They write a will with a notary and stop there. So, on that same basis, why not write a will to give your organs to unknown people? You just have to fill in the form once and that’s it. We need to change the mentality. The Life After Drew campaign is trying to do this.
Organs are part of our body. Our body is needed during our life. When the time comes for our soul to leave our body, our organs are no longer needed in that body. But if healthy, they can be transplanted in other bodies thus giving a better quality of life to other people. God wants our soul not our organs. Our body is buried. Please let us not waste our organs too; let them live in someone else’s body. Be a hero; be a legend.
Today, I have a decent heartbeat. I am living a better quality of life. I still have to take anti-rejection medicine for the rest of my life, however, I am being monitored and I do regular biopsies. I try to live a healthy life and take care of Drew’s special heart.
I consider myself a living miracle. I have been through a lot. I was close to death
twice, but thanks to God, Drew, his family, my family, Dr Oscar Aquilina, my cardiologist, Mr Manché, the medical teams and my friends, I am still here.
I wish to dedicate this article to them all and especially to my husband Charles, who has stood by me for these 20 years. We cried together. I know that it has been hard on him, especially when I was dying in his hands and told him my last words: “I love you Charles.”
DID YOU KNOW?
• You have to be 16 years old to register as an organ donor. There is no upper age limit.
• You can still be a donor if you have a medical condition.
• Once you register as an organ donor, your decision cannot be overturned by anyone.
• However, if you change your mind, you can fill in another form and your wish will be updated immediately.
• Organ and tissues donation are not even considered until all possible efforts to save a person’s life have been exhausted and brain death is declared.
• You can choose which organs you wish to donate.
• The Church encourages organ donations as an act of love and a gift of life.
For further information about how you can register as an organ donor visit www.organdonation.gov.mt or www.transplantsupport.org.mt. Organ donation forms can be collected from any health centre. Call the helpline on 2595 3324 or email firstname.lastname@example.org to request a form which will be sent to you by post. Follow the non-profit organisation Transplant Support Group on Facebook and Instagram @tsgmalta.
This article first appeared in Pink Magazine.
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