As the Scottish Parliament considers a move towards an opt-out system, Kirstin Mc llvaney, who lives in South Lanarkshire shares her feelings on what the issue means to her
I have been on the Organ Donor Register since first applying for my provisional driving licence aged 17. As a horse rider who drives on rural roads I had only ever thought about being a donor if the unthinkable happened. I never imagined being on the other side, as a recipient or as a family member.
You are 9 times more likely to require an organ than to be a donor.
That’s 9 times for yourself, 9 times more for you partner, 9 times more for your children/parents/siblings/colleagues. You are far more likely therefore to be someone who benefits from organ donation than to be affected by being a donor.
Approximately a third of people who need an organ will never receive one, this includes children who have barely begun their lives. This is hard to face when there are treatment options available but they can’t be saved without donation.
There are further reaching impacts too, Organ donation can help give grieving families comfort. Often donors have died in tragic and sudden circumstances. This is understandably not the best time to be asking families to make decisions on someone else’s behalf. If your family know your wishes in advance it is much easier for all and can help give them a focus when they hear how many people have been saved after senseless loss of a loved one.
Our organ donation experience
Our daughter, Erin, was born in July 2010, and appeared to be a normal, healthy baby. When she was five weeks old, she began to look a little jaundiced and a blood test revealed there was something wrong with her liver. She was diagnosed with the rare liver disease, biliary atresia. Doctors explained that the specialist surgery she needed, the Kasai procedure, could not be done in our most local children’s hospital in Glasgow so she would have to be transferred to the Leeds General Infirmary.
Erin had her Kasai in September and we stayed in Leeds for two weeks until she had recovered enough to allow us to make the long journey home. Although we were told it would be six months before we would know if the Kasai had been completely successful, after a few weeks Erin took a turn for the worse and had to be re-admitted to Glasgow’s Yorkhill Hospital. She had developed a liver infection that proved difficult to treat, after some weeks the infection culminated in septicaemia before we discovered her liver was riddled with cysts and damaged beyond repair. This was a very rapid progression of her disease and not what we had hoped for. Just before Christmas, it became clear that she would need a liver transplant. We were referred back to Leeds for a week of transplant assessment in January 2011.
The assessment went well and it was decided she should be listed for a liver transplant. We were told the wait could take up to six months because of her small size (she was under the magic 7kgs) but by the end of the week her condition was deteriorating. She was now too ill to be cared for at home so we would have to wait for a liver as an inpatient in Leeds. She needed round the clock IV medication to treat the persistent infection in the liver cysts, she also had dreadful ascites due increasing portal hypertension as her portal vein had become clotted. We were told things could change very suddenly either way, she was at the top of the list nationally for her weight, blood group and size.
This period of time went past very, very slowly. It felt like we were standing on top of a steep cliff and could topple off at any moment. We had no control over anything and felt helpless and lost. We tried to remain positive and enjoy our precious baby, we didn’t know how long we would have her for so took endless photos and held her almost continuously. We were told to prepare for a six month wait for an organ match, possibly longer. I knew Erin didn’t have six months left with her current liver. The realities of staying miles from home in hospital with a very sick baby were hard to communicate to family members. We felt like we only ever had bad news to share with them, everything seemed bleak. Erin’s aunt was studying law at the time in Leeds and began the process of testing to see if she could become a living liver donor. Although this would still take time it felt like something positive to focus on.
Thankfully in the end Erin was only eight days on the waiting list before a new liver was gifted to her. When the phone call came we were in our hospital room, a nurse we knew well came in to tell us the news, and she looked shocked and pale. I immediately thought something was wrong with Erin’s latest test results. The tidal wave of emotions when the news came were conflicting. On one hand I was excited, elated and overjoyed. Then the next wave was the realisation that another family had lost their precious loved one. I felt guilty how happy I had been just moments earlier, it felt so wrong that we were going to benefit from someone else’s huge loss.
After her nine-hour transplant surgery, Erin recovered remarkably quickly. She was instantly more comfortable looking which showed us just how ill she had become and how sick her old liver was making her.
She showed her feistiness by kindly removing an arterial line from her wrist on her way from theatre to intensive care! She became a master at NG tube removal as well as cannulas and had a bit of a reputation on the ward for it!
She had a few bumps on the road to recovery in the first couple of weeks which we were told to expect. Haemoglobin issues, rejection and recurrent ascites all requiring urgent and intensive management. Once everything had stabilised, about five weeks after we first left home for transplant assessment, we made the long journey home with a much happier baby.
Since transplant Erin has done very well! She’s had a few blips and requires a small army of medics to keep her on track but she enjoys life to the full and is quite a character. I think this strength of character has helped her immensely in coping with her many hospital stays and 20 plus trips to theatre.
Since receiving her precious gift Erin has become a loving big sister, a role that she takes very seriously! She has been a flower girl twice at family weddings, become a big cousin and loves spending time with her family. She has an excellent sense of humour and wants to make everyone laugh, she is great company and very social. Above everything she is very kind hearted and full of empathy and love for others.
She enjoys riding her bike, swimming and playing badminton. She has skied in the Swiss Alps, swam in the North Atlantic Ocean and travelled all over the UK on family holidays. She is a Brownie and loves being part of the Girl Guiding community. None of this would have been possible without her gift.
Her transplant has had a ripple effect of positivity, like a pebble being dropped into still water. It has had the biggest effect on our daughter and ourselves but the waves have reached much further outwards. It has enriched the lives of our immediate and wider family and friends, the local community and everyone whose lives she will touch. Her transplant has actually made a great big splash and we are so grateful for it.
I hope it brings her donor family some comfort in knowing so many positive things have come from the decision to say yes to donation. We have written to say thank you but it seems such a small gesture in return for a lifesaving chance.
We cherish this gift every day and our daughter knows her life was saved by a hero. The fact they were a stranger makes it even more heroic and she feels very special indeed. We will continue to honour her donor’s memory by making sure she has a wonderful life, where she is loved and never taken for granted.
Her donor and family will always be in our thoughts while she continues on many, many adventures to come.
I’ll be honest and say I felt comforted to know our donor family chose to say yes, whether that was something they’d discussed previously or just felt right for them, I’m glad it was their free choice. I feel uncomfortable about the idea the public perception may be that they are losing their free choice. If presumed consent is going ahead then it must be accompanied by a huge increase in awareness and publicity. It must be easy, accessible and quick to be able to opt out. Most importantly it will start the conversation in every home about what someone wants to do in the event of their own death. This will help families cope at the time of a tragedy, to have that decision known will be one less thing to agonise over.
The role of CLDF
It’s an emotional time when you are told your baby has a life threatening, incurable illness. I’ll never forget all those early discussions with doctors that often involved them drawing crude diagrams on the back of paper towels in order to explain the situation. In the first few days there was no other available forms of information, no guides or leaflets, the only way we could find out about her condition was via google which is not always accurate or ideal. This difficulty in receiving accurate information can make a situation appear very negative at the very time you need to be strong. Then after a few days a liver specialist nurse appeared with some leaflets from the CLDF. Suddenly we weren’t completely alone, suddenly ‘rare’ didn’t seem so frightening and we realised people did know about her condition and how best to treat it. CLDF were able to give us, and our families, the knowledge we needed throughout Erin’s disease progression, to transplant and beyond. They gave us fantastic transplant guide which I still regularly refer too, it has been invaluable.
Unfortunately, every week in the UK 20 children are diagnosed with a liver disease, and their lives are changed forever. That’s 20 families having the awkward discussions with doctors, and receiving diagrams on the back of paper towels. They will feel helpless and lost. But CLDF will be there to provide the valuable medical packs to those families that will help guide and inform them on their new path, they can only continue to do this with our help and support.
Treatment for childhood liver disease relies on recent medical advances which rarely receive enough government funding. CLDF funds pioneering research which has made a huge difference already but there is still so much we need to know.
Erin is doing so very well, it can be very deceiving to those who don’t know what goes on day to day in our lives, but it takes an army of medical professionals and close medical management to keep her so well. CLDF are providing information to everyone involved in her care, local hospitals, her nursery, GP, health visitors, their input will be throughout her childhood and beyond.
As Erin gets older it will be her who will need the support and education and we know CLDF will be there for her. When she is no longer an adorable small child but a spotty, grump teenager they will still support her on this journey and this is enormously comforting to us.