Organ donation week 2020: From the heart of a children’s surgeon – Mr Khalid Sharif

And the surgeon said, “I’m just a plumber: I just cut and join.”  Could that qualify as one of the greatest understatements of all time?  It is characteristic of this good man, Khalid Sharif, that, when invited to contribute a blog on organ donation from a surgeon’s perspective, he chose to write, not about the professional skills and details of his surgical, life-saving procedures, but about his patient, and the special relationships he and his team contribute to the complexities of the healing process.  Skill there is in abundance.  Hours committed above and beyond any ordinary working day.  Or night. And after the most concentrated and demanding of operations, time given to the family to bring a personal report.  Beyond the time spent in the company of his patients and their families, there are many other professional responsibilities and commitments outside and far from the wards of Birmingham Children’s Hospital.  But always a readiness to be called back to the priority time in the theatre, holding the lives of precious children in his hands…

 

BCH team November 2017

(L to R: Back row: Mr Khalid Sharif, Consultant Hepatobiliary and Transplant Surgeon, Lucia Quinney Mee BEM, Philippa Lewis, Transitional Youth Worker, Front row: Dr Girish Gupte , Consultant Paediatric Hepatologist, Dr Jacqueline Blyth, Consultant Clinical Psychologist)

Way back in 2007, an 8-year-old little girl was transferred to our unit for the management of her sudden onset of Liver Disease. Over the following years it was our privilege to get to know this little girl and watch her grow up to be an awe-inspiring young lady.

It became evident very quickly, during her investigations and workup, that she would require a new liver.  I still remember trying to explain the surgical management plan for her disease; she was quite sick but even at that point it was clear to see that this little girl had spirit and determination. She wanted to know the details and this never changed throughout the time we knew Lucia.  She was in urgent need of a transplant but it was also becoming evident her disease, unfortunately, had the risk of recurrence in any new liver graft with the possibility of needing more than one transplant.  She was shy when asking questions and at times she looked at me with her deeply jaundiced eyes.  Her answers to my queries were always a “Mm hmm”. I had to clarify if “Mm hmm” was “Yes” or “Mm hmm” was  “No”.  This style and our relationship never changed for the rest of her life.  I gather whenever this was repeated it brought a smile or more from Lucia.

A few days after listing for liver transplant she received the precious gift of a liver graft.  The transplant procedure went well. However, her road to recovery had a few bumps and twists. She always showed a positive attitude and complied with the instructions including doing physiotherapy and taking her medicines, learning quickly alongside her family about life after transplant. She made a good recovery and was soon home to her beloved beach and home. Her energy levels returned, and she gathered energy, giving energy to those around her to.

Lucia was lucky to have beside her during her transplant journey her parents and sister, always in the “cheer-leading position”, encouraging and supportive. They never complained, always had a positive attitude and at times they supported the whole Multi-disciplinary team.

Unfortunately, the disease recurred in her graft after a short while and she was again in the need of re-transplant.  Despite knowing the surgical challenge of re-transplant, including the risk of losing her, the team went ahead with re-transplantation.

In 2015 we faced further challenges and Lucia required a 3rd lifesaving transplant. By this point she was a young lady with opinions and definite views about her treatment options. After much discussion, information sharing, debates and chat Lucia was placed on the transplant list once more. Again her parents and sister were by her side, discussing the pros and cons of living related transplant. Lucia was making her views known and ensuring she was listened to. We learned a lot as a team from just listening to this now young lady.

In the eleven years we looked after Lucia she had three transplants, each with its own surgical challenges.

Lucia, however, made sure that every moment counted when she was well. She enjoyed singing and dancing on late nights out and sleep-overs with her friends.  Taking part each summer in the UK Transplant Games first for the Children’s Hospital and then for the Northern Ireland team. She was also a member of the GB & NI swimming team at the World Transplant Games.

Lucia was passionate about raising awareness around organ donation. As a team we were so proud when she was awarded the British Empire Medal for raising awareness about organ donation.

In 2018, Birmingham hosted the UK Transplant Games and Lucia was one of the children’s hospital team managers, helping to organise the team, making sure competitors were in the right place at the right time and ensure the event ran smoothly.  Lucia supported and encouraged the children to participate, making sure that a lot of fun was had along the way.  Once again Birmingham Children’s Hospital team won many medals and the trophy for best children’s team and best liver team. I went along to the event; she was like a butterfly, always active and inspiring with a smile on her face.

This was all possible due to the transplants she received, and she was profoundly grateful to her donors and their families.  She always remembered to thank and credit them for her achievements. She encouraged everyone to “have the conversation”, she promoted organ donation at every opportunity.

I don’t remember how I started calling her “Quinney Mee” after her first transplant, but she always used to reply to me with a smile when I called her with this name, even when she was really sick. She always wanted to take responsibility for her care and treatment plan, hence wanted to know all the details.

When she reached 18, we had to make the hard decision of transferring her care to the adult team as she could no longer be categorised as a child even though, for us, she was still “Quinney Mee”. She visited the hospital to say good-bye and wrote personalised letters to every team who was involved in the care.  She regarded the Children’s Hospital as her second home and will always be part of our “BCH family”.

It was the generous gift of organs which allowed us as a team to witness this little girl grown up and become a young lady, to have a life full of activities, lots of friends and make a huge contribution and difference to society on her incredible life journey.

More importantly it gave Lucia and her family over a decade of memories of family time which they enjoyed together.

I will always remember my “Quinney Mee”.

Khalid Sharif

 

Organ donation week 2020: The donor and their family – Oisin McGrath

Every year, at the Opening Ceremony of the Transplant Games, the athletes from competing hospital teams across the UK are applauded into the venue with joyful, wide-eyed anticipation and delight.  Over 1,000 athletes, of all ages, and another 1,700 or more spectators.  Each team has their own loyal supporters, many are family members who have supported their athletes through much harder times.  The last people to enter the venue are the donor families.  Every year, however many times we’ve done it before, as the entire crowd rises to its feet with the loudest and longest applause of respect, honour and gratitude, there are tears.  These families, and many like them, are the reason our athletes are able to be here.  And the personal price paid so this moment can happen is beyond measure.   So, for your story, and on behalf of all those who stand in honour of donors and donor families in the Transplant Games stadiums, who clap until our hands throb red, and the many, many more whose lives are changed and immeasurably blessed by these bravest of decisions, thank you, Sharon and Nigel, and all those like you who give your greatest gifts.  Be proud… Read More »

Organ donation week 2020: Working with hard conversations – Nisa Francis

Organ donation laws vary across different countries in the United Kingdom. Wales was the first to move to an “opt out” system where, unless you have registered a different decision you will be considered to have no objection to organ donation.  England adopted the same system in May 2020 and Scotland intends the same in March 2021.  Northern Ireland is expected to begin a consultation process on the “opt out” system this autumn.  Whatever system is in place where you live, and whatever your decision, for donation to go ahead it would be discussed with your family and their support would be needed.  The aim of this week, and of these blogs, is to encourage those conversations between family and friends in easier moments so that, should the occasion arise, these hard decisions can be made with more strength, confidence and even pride in helping another person. There will always be kindness, as Nisa explains… Read More »

Organ donation week 2020: The waiting list – Aaron Smyth

NHS Blood and Transplant manages the NHS Organ Donor Register and National Transplant Register, “…which lets us fairly match donors to people who are waiting for a transplant. Thanks to our amazing donors, we were able to facilitate nearly 4,000 transplants in 2019/20. This is fantastic, but there is still a lot more to do. There are currently around 6,000 people on the UK Transplant Waiting List. Last year over 350 people died while waiting for a transplant.”

We are grateful to Aaron for this insight into his own time of waiting…

My experience on the Transplant List

Aaron and Eimear

In Spring 2015 I had a third infection in my liver caused by Primary Sclerosing Cholangitis (PSC). PSC is a chronic condition that damages the bile ducts and liver. I had suffered and known about the condition for years and I was well aware that this was the trigger for a liver transplant assessment. I was 23 at the time. Read More »

Today the NHS celebrates its 72nd birthday

Today the NHS celebrates its 72nd birthday.

On your birthday, NHS, we would like to be able to give you the full resources you need, human and material, to do the jobs you chose to do to the fullest. We would like to give your public service a guarantee of protection you can trust. We would like to provide accessible opportunities for training for those who wish to dedicate their lives to the care of others and welcome and security for the diversity of those who come to care for us from other countries.

On your birthday, and every day, we would like to give you confidence and time to reflect on the work you do, to learn from genuine mistakes rather than hide them for fear of punishment and to learn even more from the good, the better and the excellence that is easily shrugged off as “just doing your job”. The chance to be proud of what you do and the opportunities to make it even better when you can see a way.

You, NHS, and the gracious and brave donor families, gave Lucia, the founder of Live Loudly Donate Proudly, 12 more birthdays than would have been possible without her liver transplants. We know what beautiful and fruitful years they have been and how much life has been celebrated.
With deep gratitude we wish you a happy birthday and give you our promise that if we can’t give you all of the gifts we would like to today, we will stand with others who want to do the same until we can.

Service in Honour Of Lucia

The service for Lucia Quinney Mee, held on Wednesday 3rd June 2020, 4:00pm, in Honor Oak Crematorium, Camberwell, London, is now available to view, until 30th June 2020, on the following link:

www.obitus.com

Username: Huji0614
Password: 102516

We are grateful to all who played a part in the service and to those able to honour Lucia with their presence in person or online in many other locations, within and beyond these shores.

We are also moved by and grateful for the many cards and messages that reflect Lucia’s joyful and encouraging impact on so many people of all ages.

Knowing Lucia as we do, we will travel on from here in friendship and solidarity with one another, expecting to see her light and inspiration ahead of us, awake to the love that holds us together.

Live Loudly, Donate Proudly.

Swimming to the surface

Lucia has managed Live Loudly Donate Proudly with energy, grace and wisdom since starting the campaign in September 2015.

Her last blog was from the Liver Intensive Therapy Unit of King’s College Hospital, London, two and a half months after her fourth liver transplant. Lucia, with everyone, was working towards her recovery.

What follows is a message that we, Lucia’s sister Alice and her parents Rachel and David, shared on Sunday 24 May 2020.

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