Kaylee was a model baby so when she failed to feed or even show interest in taking a bottle one hot August Sunday, it was uncharacteristic and after an unsuccessful day of trying to ensure she even took water to avoid dehydration, a trip to the GP was organised for the next day to check all was well. The GP suggested she had a chest infection and prescribed antibiotics and Calpol and suggested perseverance was the key. However, a strong believer in ‘mothers instincts’, I was unhappy with the diagnosis and uncomfortable with the persistent groaning noises throughout the night coming from my baby. On Tuesday morning, following a restless few days for us all, determined to get to the bottom of this problem and also concerned at the lack of fluid taken orally by Kaylee for almost two full days, I prepared to return and challenge the GP.

Ironically, being a teenage mother had its benefits and to this day, I believe that I was a lucky Mum as on that day, my Health Visitor decided to pay a ‘spot check’ visit. This was routine for young Mum’s, just to check they were coping. At 10am, Kaylee was already in the buggy in the lounge ready for the trip to the GP and I was just about to leave my home and walk to the GP Surgery. Hearing a knock at the door, and relieved to see the Health Visitor, I gave a quick resume of the situation on the doorstep. She came into the lounge and to our shock and horror, Kaylee’s lips were turning blue. The Health Visitor took one look and instructed us to get into her car immediately. A quick trip to the GP surgery and a frantic dash to the examination room, suddenly there were people looking at Kaylee and the dreaded word meningitis was mentioned. In no time at all, we were in an ambulance and flying along the motorway with the sirens blazing, back to the hospital where Kaylee was born.

It was such a surreal situation. On arrival, Kaylee was whisked away and I was led to a waiting room and asked if I wanted to make a phone call to my husband. Soon, he and my Mum arrived but there was no news.  The next time I saw Kaylee, it was horrifying to see that she was linked to several IV drips and actually had an IV inserted into her head. Later, I discovered that all her veins had collapsed and it was the only place they could gain access to her bloodstream. Situated in the waiting room, I recall it was raining hard against the windows and also thunder and lightening. Scared and confused, it was as if we were living in a horror movie and we were the characters. Everything seemed to happen in slow motion. We were obviously in shock.

Several torturous hours later, we were told that Kaylee had a problem with her heart. Following an X-ray, it was discovered her heart was so swollen, it almost filled her chest cavity and she was being transferred to the Children’s Heart Unit at The Freeman Hospital in Newcastle. It transpired that the reason she wouldn’t and couldn’t feed was that her heart was failing quickly and she didn’t have the strength to even suck and take on food. The groaning noises were literally distress signals as her little body struggled to function as her heart grew weaker and weaker.

We travelled to The Freeman Hospital in an emergency ambulance and I remember travelling over the Tyne Bridge, sirens blaring, with my precious baby in an incubator, clinging to life, as these were the longest moments of my life. On arrival at The Freeman Hospital, again, Kaylee was whisked away and finally, after several hours, we were allowed to see her in the ITU. The sight of my baby on a ventilator, a machine breathing for her and the space blanket covering her to retain her body heat was terrifying.

The Cardiac Consultant took us to a quiet room and gently explained that we were very very lucky. In his opinion, without the swift action and the ‘motherly instinct’ that rejected the initial diagnosis and gave way to the feeling that something was not quite right, he explained that is was highly likely that Kaylee would have died at home in her cot, of heart failure, that night. Someone somewhere was looking out for us on that day and I am still a firm believer that a mothers instinct should never be ignored. Kaylee was diagnosed with cardiomyopathy – a viral infection that had attacked her heart. After a week of tests, we were faced with the terrifying news that there was no cure.

 Why Me!

I remember being told that heart transplantation was the only option and thinking ‘Why me!’ Why had I done wrong? Had I not cared for her properly or sterilized her bottles properly?  No amount of explanation from the medics about unknown causes would take away the guilt I felt? I was haunted by this guilt for many years afterwards until I finally accepted this was not my fault and it could have happened to anyone. I am not religious and to be perfectly honest, I was angry. Why my baby? When the hospital chaplain Malcolm visited to offer support, I sent him away as I felt that if there was a God, why was my baby poorly! He came back the next day, and the next day, and the next day, not to offer religious aspects but just to be my friend. I will never forget his kindness as I really needed friends at that dark and desperate time. Malcolm was in America on holiday when Kaylee received her transplant and called as soon as he heard the news.

Decision Time

Making the decision was easy. Should we give Kaylee the chance to live or let her die! Simple really! What would you do if this was your baby? Despite the challenges and the high risk, I trusted the transplant team. I remember the two days prior to Kaylee’s transplant. We had been told that there was a real possibility that a donor would not be found as baby transplantation just wasn’t common so we were prepared for the worst from the very beginning. Even if a heart became available-it was a 50/50 chance of the surgery being successful as she was so tiny. Even then, would she survive after the surgery as the only two other babies transplanted in the UK had died postoperatively several weeks after their surgery. No one even knew if the heart would grow with Kaylee-it was an enormous gamble but one we were willing to take.  At the time in the UK, there was a moratorium on baby heart transplantation due to previous failures and the concerns relating to experimental surgery on babies and special permission had to be gained from the then Secretary of State for Health, Kenneth Clarke to list Kaylee for transplant. However, where would we be today if this was not attempted and pioneered somewhere by someone – for all life saving surgery, not just transplantation?? What if Christiaan Barnard had not attempted the first heart transplant in South Africa on December 4^th 1967.  We had everything to gain and nothing to lose by trying or the alternative as simply to make her comfortable and let her die. I will always be eternally grateful for those who fought behind the scenes to save my baby and allowed her to become the amazing young woman she is today.

The Waiting Game

Waiting for a donor organ was unbearable. Kaylee was initially on a life support machine for the first four weeks and each day, her life hung in the balance, waiting for a chance that may never have arrived. Initial success had been reported in America where several very small babies had received new hearts and were doing well, however, it was so new; these babies were literally only transplanted months before. I felt constantly guilty-I was waiting for a family to lose their child so my child could live. I was praying for a family to make that decision. In hindsight and as many other parents feel this way, I now realise that even though my baby was so desperately poorly, some one somewhere sadly would experience what I didn’t want to do, regardless of whether Kaylee needed a new heart or not. However that did not stop the pain and guilt at the time. When the call came on 13^th October 1987 and the surgery began, I hid in the little waiting room and cried oceans for the family whose baby had died. To this day, I am still very emotional when discussing this particular issue. This will never change.

My saviour throughout all of the madness was the transplant coordinator, Lynne Holt, who held my hand for the whole transplant journey and remains a close friend to this very day. We travelled a whole new journey together as a team, a very close team with no idea of the outcome. The Team members include the transplant team, Kaylee, myself, Lynne, Kaylee’s stepfather Steve, her sisters Kaylee and Lindsay and our extended family and friends. We are still on this journey today!

Life after Transplant

Looking back over Kaylee’s life and my own, I have spent my lifetime and her lifetime planning and campaigning for others to have the same opportunity, in a way, to repay the gift. In my naivety; I thought it would make the local newspaper. Instead, the news of Kaylee’s successful surgery was broadcast on the Reuters news agency world wide and our insular world was suddenly invaded by world wide publicity. Sacks of mail, presents and Get Well cards appeared from all over the World, delivered to the Freeman addressed to Baby Kaylee. We even received Get Well cards and letters from several inmates at Durham Jail. All are carefully preserved in a special box. Her progress has been monitored and celebrated via birthdays and special occasions both locally and nationally by the media and she is an incredible ambassador for the success of transplantation. The involvement of the local media has been paramount to the campaign as it was the Evening Chronicle ‘Operation Heartbeat’ appeal that funded the heart transplant programme at The Freeman Hospital in the early days and the campaign to raise awareness by local media has never dwindled. Many local media feel a close bond to Kaylee as they remember when she received her new heart and were part of this amazing unfolding history making event, right here in the North East.

My beautiful girls, Kaylee, Lindsay and Rebecca are the centre of my World and I although I am incredibly proud of Kaylee and her inspirational achievements, I have to pay tribute to the patience, kindness and understanding of my other children. I realised at a very early stage that Kaylee would be offered lots of opportunities and we would be heavily involved with media promotion, which brought many fantastic opportunities to meet celebrities and pop groups to mention just a few, however as the mother of two then three children I needed to ensure that Kaylee did not become more important that Lindsay and Rebecca. I insisted that whenever an opportunity came along, my other two children were involved as transplantation does not affect just the transplant child-it is a lifetime commitment and involves the whole extended family.

I am incredibly proud of Lindsay and Rebecca for the support and understanding they have shown throughout their lives and they too have grown up to be thoughtful, kind and caring individuals. I also owe a great debt to my wonderful husband Stephen who, when I met him in 1996 as a divorced mum with three children, one of whom was a transplant recipient- he has never ever let us down and in 2007, we married in Mauritius with Kaylee, Lindsay and Becky as bridesmaids-and they came on our honeymoon!

I also have to admit being irritated by some people who through their naivety say we are lucky to have such great opportunities as I would swap this scenario in a heartbeat. Who wouldn’t? Although Kaylee is fit and well and was indeed a pioneer and we would not have led high profile campaigns as a family for over 20 years, we would have had a different life. A friend once said ‘God only gives the special children to those who can cope!’ Is this true I wonder? 

I also feel very proud when other parents and recipients say that Kaylee has been an inspiration to many, throughout their own dark days and she is often approached by members of the public who wish her well, often telling her they have followed her progress since she was a baby. However, the greatest accolade is when people state that they joined the NHS Organ Donor register after seeing Kaylee’s story and that they have discussed their wishes with their loved ones. This is the result Kaylee creates with her incredible story working with the media. The picture below shows Kaylee with members of the medical team who saved her life 34 years ago, including Transplant Coordinator Lynne Holt.

Transplantation creates miracle stories every day however the heroes are the donor families who selflessly give to others with no gain for themselves. Each and every day, I give thanks to the family whose brave decision utterly changed my life and gave life to my child. There is no greater gift. Thank you is such a small word and just never seems to quantify how I feel as a mum. A stranger, whom I have never met, gave the most precious gift, the gift of life, to my very own baby. I owe a huge debt to this family and I am forever grateful, each time I look at Kaylee. On each anniversary, amongst the celebrations, my family and I spent reflective quiet time remembering the amazing family who made this possible. Maybe we will meet one day!

Growing up with Kaylee…….

It’s hard to believe that Kaylee is 34 years old now -I keep pinching myself and having emotional moments as in October 2017, we celebrated the 30th Anniversary of her history making transplant in 1987. This 30^th Anniversary Event was not only being held to celebrate Kaylee’s amazing milestone but to look at the success of paediatric transplantation in the North East and celebrate the local, national and international achievements of the transplant programmes on Tyneside!

Who would have thought that 34 years later – Kaylee would be a fit and healthy young woman in the prime of her life, working and playing hard as any young person would do-making the most of each day and importantly-having fun! The impact of her successful surgery had repercussions nationally and internationally as day by day, month by month and year by year, she grew up in the glare of the media and under the watchful eyes of the medical professionals who saved her life with their courage and determination. As her mum, I could only watch and make sure I cared for her carefully so infection and rejection were not her downfall, as these are the risks of transplantation.

During the early days, I often wondered if the staff at the Freeman Transplant Unit wanted to buy a T-shirt for me stating ‘Worlds most paranoid Mother’ however they were amazing – never ever wavering in their support and kindness. We were one team; all on a learning curve and one slip up could have cost Kaylee her life so diligence was the key. I was not going to let that happen and Kaylee defied the odds many times during her childhood as she caught all normal childhood bugs, and survived.

Normal life?

Kaylee had to go to school! Initial enquiries terrified teachers and eventually, I agreed to accompany Kaylee to Nursery School to enable the staff to build up confidence as initially, many teachers were simply scared of the unknown. As a child who was closely watched by the media and heavily medically monitored for signs of rejections and infection, it was time to share the responsibility with others. As her family, we too were scared of the unknown so we all tried and succeeded to maintain a careful balance based on trust for all parties. The Head Teacher at the Primary School was initially reluctant to accommodate however once he was reminded that Kaylee needed to go to school and we were indeed living in his catchment area, he really needed to get used to the idea! As a forthright parent and very confident in my knowledge of Early Years and legislation due to my training, I knew it was impossible for a school to refuse a child on the basis of being scared! Kaylee did not have any disabilities and many children with heart conditions attended mainstream school. She didn’t actually have a heart condition – she had a new one, so actually, she was fit and well to take part in everything school had to offer.

So, Kaylee stared school aged 4 years old and it was a great day, in fact, a day we thought we would never see. Working in partnership with the school, her needs were met and everyone settled into a comfortable if not careful routine maintaining a close watch on her medical needs when appropriate. In the early days, hospital visits and indeed overnight stays were regular as we all struggled to maintain a careful yet proactive approach to ensure that whilst Kaylee was allowed to have a near normal life, that vigilance played a huge part to protect her from infection. However, despite her experiences and health concerns, Kaylee maintained an excellent attendance record up until she left school aged 16 years old, except for a 12 week period at secondary school.

Her Head of Year at Oxclose Comprehensive was so impressed, in 2001, Kaylee was nominated for a Child of Achievement Award for her fearless battle and her dedication to ensuring others have the same opportunity of life by promoting the Organ Donor Register.

Passion for sport and media involvement

Kaylee was placed in a unique situation, in many ways as an iconic figure in the World of transplantation as everyone remembers who was first! Her story mirrors the first Test Tube baby, Louise Brown where each tiny milestone was covered by the media on birthdays, transplant anniversaries and there was immense interest in her everyday life such as her first day at school. Kaylee’s story has successfully encouraged many to sign onto the ODR and also highlighted her incredible achievements and cheeky personality through her love of sport.

The British Transplant Games is an ‘Olympics’ for transplant recipients. The main aim is to highlight how fit and well transplant recipients can be following their life saving surgery however the important message is to promote organ donation.

As a child, aged 2 years old, she first attended the British Transplant Games in 1989 in Leicester. She was the only child entrant and of course, she won a gold medal in her chosen event ‘Throw the Welly’.

An amusing yet clever PR stunt that once again catapulted her into the national media spotlight, however gained valuable support and public awareness that children were also listed on the National Transplant Waiting List. The effect was immediate and people realized that transplantation affected children too.

Since those early years as a 2 yr old in Leicester, who would have believed that she would go on the represent her country on the World Stage at The World Transplant Games. Kaylee attended the British Transplant Games almost every year in the UK and in Nancy, France in 2003, she lifted the Union Jack above her head on a medal podium for the first time. Kaylee attended the World Transplant Games in Canada 2005 and Thailand 2007, again, winning medals and as a Mum, I could not have been prouder. Kaylee has been an amazing advocate for the success of transplantation and was invited to Downing Street for the 10^th Anniversary of the NHS Organ Donor Register to meet the Prime Minister Tony Blair.

Her love of the Transplant Games has brought her through the most difficult times and in 2009, the WTG were held in Australia. Kaylee was so excited to be selected for the UK team and threw herself into her track training at Gateshead International Stadium. However, in March 2009, she became seriously ill and further investigation revealed that she was in heart failure and she was hospitalized. When she was finally allowed to go home, even walking to the car was a struggle and work was out of the question. This was a dark time for everyone, Kaylee, the medical team and her family as we were teetering on the edge of retransplant. Could this happen? For several child recipients, this had indeed happened and they had received successful second heart transplants. Was this the future for Kaylee? Thankfully, through the dedication of the medical team and her own grit and determination, she recovered and although she missed the World Transplant Games in Australia, gradually, she regained her strength, worked hard and finally, once again represented the UK at the World Transplant Games in Sweden 2011. After such a serious illness and effectively, a two year journey back to health and gradual training, Kaylee did not win any medals, however, in the transplant community, medals are not everything. Fighting back from the brink of retransplant, the biggest prize was simply being there. We shed many tears in Sweden, shared with friends and team mates at the enormity of what Kaylee had achieved, simply to be there.

Lifetime achievements and goals……………….

In August 2013, Kaylee achieved not one but two lifetime goals-to win a Gold medal at The World Transplant Games and to dive with sharks in South Africa after missing the chance in Australia when she was ill. Following her selection for Team GB to compete in Durban South Africa in October 2012, she made it her goal to achieve the highest accolade she could. Intensive training, 3 weekly and a staunch determination to succeed were on the menu for the next 8 months as she toiled and trained as hard as she could. Kaylee trained at Gateshead Stadium with a personal coach at Gateshead Harriers until she was in peak form. Nervous but excited, she set off to Durban with an ambition to aim for personal bests in 100m and 200m and perhaps be selected for the 4 x 100 women’s relay although she was already on the reserve list. When the day came in a beautiful sun lit stadium in the shadows on the Moses Mabhida Stadium in Durban – she thrilled herself with a PB in both the 100m and the 200m. No medals, but an amazing buzz from her own personal achievement, which is what counts personally. However, due to a team mate injury, she then found herself in the selection for the 4×100 relay in the first leg. Off like a shot, leading for the first 100m until she passed the baton and then to screams of delight after the next 300m-the Team GB Women’s relay team passed the line first. In fact, one team mate Emma, who had fallen over earlier in the day, actually ran the relay with a broken arm-not knowing of course! Massive celebrations were felt across the Stadium – but for one amazing young lady-her ultimate dream had actually come true. There was not a dry eye in sight at the medal presentations and that one moment signified a lifetime of living for Kaylee – and of course her Team GB relay Mates Emma, Zoe and Lora-pictured below celebrating their achievements.

To be honest, after that amazing achievement, diving with Sharks was a bit of a doddle as demonstrated by this plucky young lady!

Kaylee’s continued contribution today…….

Perhaps one of Kaylee’s greatest achievements is actually not in the field of sport or even her struggles in the world of education, but her ability to relate to and work with children and parents who find themselves in the same situation. Kaylee is the most unassuming young woman and in the early stages of her adulthood, she needed to understand and fully come to terms with what happened to her and the amazing impact her life saving story has had on many. Her involvement with high level publicity is priceless for the transplant community and her promotion work as a child and now as an adult is immense. She often asks ‘Mum, do I make a difference?’, and the answer of course is always Yes, you do! To watch her now as a young woman, visit a newly transplanted child and speak to their parents or to watch her gently encourage a transplant child at a sports event is testament to the incredible presence she has in this community, and yet, the majority of the time, she doesn’t realize the impact. Nothing about Kaylee is false and her empathy for others shines through during her day to day involvement with the transplant community. For a child who cannot remember actually what happened to her as she was too young, this is a true gift..

One story-many waiting

Kaylee is one story, one life amongst thousands nationally and World Wide. So, how does this affect you? It’s simple really-this could have been you! I was an ordinary young mum, leading an ordinary life and looking forward to caring for my new baby and carrying on with my ordinary life! And this happened to my baby. The reality of the concept of losing a child was non negotiable and deep down, throughout all of the anguish and fear was the unchangeable maternal instinct to protect and look after my baby. Imagine if this was taken away from you and you had to rely on the generosity of a stranger. I did!

Nothing will ever replace the feeling of grief a donor family feel when a loved one has passed away, often in tragic circumstances however; they gain great comfort and tinged enjoyment that their decision has led to such an amazing outcome-saving another life. Many describe this feeling as bittersweet. Many donor families play a major part in the close world of transplantation and their contribution after such a tragedy is testament to their special place in this world, as the unsung heroes.

What about your family?

Statistics from UK Transplant show us that you are far more likely to need a donor organ in your lifetime that you ever are to become a donor. Would you receive without considering giving the gift of life to others? Talk about organ donation with your family. It only needs to be one conversation in a lifetime. Look at your own children, your parents, your own family members and friends. Imagine you were in this position and what would you do? Transplantation has no boundaries. Where ever you are in life and from which ever social background-there is no escape. Wealth does not buy health. So don’t make the mistake of saying you don’t want to talk about it as it doesn’t affect you! Make your wishes known.

Speaking to donor families, the hardest decision is to have to make a decision without knowing what their loved ones wishes were. At a time of deep emotional turmoil for any family who have lost a loved one-this is a question they simply don’t want to consider, simply because they don’t know and had never had that conversation. Families who do know are able to make that decision with a clear knowledge that it was a specific wish. Please become one of those people. One day, it may be you, waiting for a family you have never met and probably never will meet to decide your future, or the future of your family member dying on the transplant list!

Please visit www.organdonation.nhs.uk or call 0300 123 23 23 to register. It only takes a few minutes to have a chat with your family and friends and to register. Please remember – you are more likely to need a transplant than you ever are to donate, so think about what you would do if a member of your family was on the transplant waiting list! We were a normal happy family – and this happened to us! Thank you.

Carol Olley (Davidson)

May 2021