was seventeen years old when South African surgeon
Christiaan Barnard performed the world's first heart
transplant on 3rd December 1967. As an arrogant, naive
teenager I thought this meant an end to medical problems
meaning we could all live our live as we wished and when
something broke down it could be preplaced just like fitting
a new part to a car. I had no idea how my life would be
dominated by organ transplants.
It would have been round about 1974,
perhaps 1975, when a mother of a boy at the school where I
was teaching spoke to me about worries she had for her son.
He had no effective functioning kidneys and had to hook
herself up to a home dialysis machine every day. She said to
me how she worried what her son was getting up to while she
was hooked up to the life-saving machine. I pondered
that if I ever got married and had children of my own I
should take out private medical insurance just in case one
of them needed transplant surgery.
I was married in October 1978. If Maureen
and I could have asked for a perfect family it would be to
have two sons followed by a daughter. But the Ashford
Family did not have girls. The two sons came along: Peter
and then Matthew. There was no scan available in the early
1980's to determine the sex of an unborn baby so we prepared
for son number three who was to be called Mark.
There was also no Milton Keynes Hospital
so Maureen was in The Royal Buckinghamshire Hospital in
Aylesbury waiting for our new son to be born.
My paternal grandmother, Lily, longed for
a daughter but never had one. Her husband had an older
sister, born in 1883, Jessie, there had been no Ashford
girls since. Lily had three sons and then four grandsons.
Peter was her first great-grandson, followed by my brother's
son Jonathan and then Matthew. She gave up all hope of
seeing an Ashford girl.
I received a phone call from Royal
Buckinghamshire Hospital telling me to make my way to
Aylesbury as my baby
be born in about half an hour. I had to get the boys to
Maureen's parents to be looked after and then make the long
drive to Aylesbury, there was no way I could get there in
half an hour !
Walking into the ward Maureen was holding
our baby. She said to me: "Say hello to you daughter."
I replied: "A girl. Are you sure ?"
Smiling, Maureen said: "Go and phone your
In the public call box I said: "When are
you coming to see your great-granddaughter ?"
Nan told me later that when she put the
phone down she cried. My Nan cry ? She was a
formidable lady but at the age of 93 she had at last seen an
Ashford girl. Rebekah was the first Ashford girl for one
Our family was complete. However,
within her first year it became clear that Rebekah was not
developing in the same way as her brothers. Peter walked at
ten months of age, Matthew at nine months. By her first
birthday Beck was not walking. She was not a happy infant.
She refused to eat properly, food to her was a punishment.
Our GP referred her to the newly opened Milton Keynes
General Hospital. Within days of tests we were asked to take
Rebekah back to the hospital for those tests to be repeated
as results were not as they should be. Those tests
confirmed that Rebekah was suffering from chronic renal
failure. This had been caused by a condition called reflux,
when a person with reflux goes to the toilet urine back
flows to the kidneys and damages them. Rebekah urgently
needed an operation to stop the reflux, her failing kidneys
would be supported as best they could through complex
prescription of medication but the only way her life could
be saved would be to receive a kidney transplant.
Maureen took Rebekah to Guys Hospital for
that initial consultation on the train. I was running an
sponsored disco at Leon School, sponsored for a new charity
in Milton Keynes, Willen Hospice.
I remember so well Maureen coming to the
school in the evening to tell me the news, she had written
everything down onto a piece of paper. I don't think I
properly took everything in.
One week later Rebekah was in Guys
Hospital having that operation to correct her reflux. By her
side was he favourite doll, Chell. Chell was always with her
in hospital and always went down to the operating theatre
receiving the loving medical care she needed Rebekah was a
happy, cheerful little girl. I defy anyone to find a
photograph of her where she is not smiling.
Plans were put in place for her to
receive the life-saving kidney transplant she needed. The
operation would be performed by Transplant Surgeon Geoff
Koffman. He was a wonderful man. always known to the
children and their parents as Geoff. He was a world-leading
expert on paediatric transplant surgery but meeting him he
was an ordinary, loving man. Years later a leading medic
would say to me: I do not treat my patients, I care
for them. That was Geoff Koffman. But it was more even
than that Geoff genuinely loved the children in his care.
Medical science had advanced so far since
the days of Christiaan Barnard but there were no mobile
phone in those days. As Rebekah went on call for a donor
kidney we had a bleeper. Who remembers them ?
That bleeper went off just one week into
Beck being on call. We raced to Guys Hospital and Geoff got
to work. Even though she was seriously ill Rebekah had a
powerful immune system. He body rejected the kidney on Day
had to operate again and remove the failed organ.
Returning home she was given a beautiful
bouquet of flowers. She went back on call for another donor
kidney. The bleeper went off, we dashed to Guys Hospital in
London, Geoff did his work and again on Day Thirteen
Rebekah's powerful immune system rejected the kidney.
Guys Hospital is located right in the
centre of London. Today it s next door to The Shard. It was
easier for me to go to the outpatients appointment with
Rebekah than it was for Maureen. Leon School, where I was
head of year, was so supportive of me. From Headmaster Bruce
Abbott to my teenage students all showed me love and
support. Initially I used the train to London but, believe
it or not, it was easier to drive. That would not be the
case today !
I had to drive right through the City of
London then over London Bridge and park in an NCP
car park then walk the short distance to Guys Hospital. In
1993 the IRA detonated a bomb in Bishopsgate, blowing an
enormous hole in he road and forcing me for months to come
to make a detour when taking Beck to hospital.
Beck's medication and test results were
meticulously recorded in a little green notebook by her
consultant Doctor Susan Rigden. I seldom needed to look at
the book, I knew the prescription by heart.
There was another occasion I remember
when driving to Guys Hospital that was full of incident.
British Rail, pre-privatisation, was on strike. Reaching our
destination it was impossible to park. I had no choice but
to park on double yellow lines and face the fine. Back then
the police were in charge of parking, not local authorities
and private cowboy parking companies. When I returned to the
car, after the clinic and I do have to admit a visit to
McDonald's the car was gone ! It had been towed away
to a pound by the police. That police compound was miles
away in Brixton. I took a taxi to collect it. Te taxi driver
refused to charge me for he journey ! Such love.
It cost me £100 to get my car back, how much would that be
Consultant Sue Rigden wrote to The
Metropolitan Police, explained the situation and asked that
the parking fine be waived. Immediately the
Commissioner of The Met agreed and then went further, he
refunded the money I had paid to get my car out of the pound
came to know Elizabeth Ward, an incredible lady. When her
son, Timothy - better known as Timbo, died from renal
failure she set up The British Kidney Patients Association.
Very wealthy and with the highest connections Elizabeth had
no problem telling politicians what they were going to do.
Elizabeth could click her fingers and the leaders of
industry and politics came running. While she could command
at this level she always had time for people who were ill
and receiving the help The British Kidney Patients
Association was seeking to help. Love ! She knew
Rebekah and gave our family personal support.
Elizabeth founded the Kidney Donor Card
which went on to become the Organ Donor Card. Rebekah had
one, on it she crossed out kidneys saying she would donate
all of her organs but the kidneys were not of much use !
was an active, happy child. I remember watching her playing
in a hockey match at school. A boy standing watching said to
another: Look at her, she could die any day but she is
still playing. That was Our Rebekah.
Beck was not put on call for a third
transplant. The idea of dialysis was played around with but
the decision of the expert medics was that a live donor
organ was the way forward. Both Maureen and I put ourselves
forward to give Rebekah one of our kidneys..
I was in my office at Leon School when
the phone rang. It was consultant Sue Rigden. Are you
sitting down ? You need to be, it is you who is the best
match for Rebekah !
OMG ! I had not been in hospital
since being born in Heathfiled Road Maternity Hospital in
Birmingham. It did not help when surgeon Geoff Koffman kept
saying: You understand your operation will be far more
painful than that of Rebekah's ! Geoff did I need
to know that ?
I decided to use this dual operation and
live donor transplant to support Elizabeth Ward and her
work. I persuaded ITN to film the operations and broadcast a
news special promoting the donor card.
illness was demanding on the family finances. I
started earning some extra money writing newspaper and
magazine articles. These were published in 1994 in my book
Not The Concrete Cows. There is a special feature on the
work of Elizabeth Ward in the book. A woman's magazine
offered me a very large sum of money to write a feature.
However, I had to write in a special format, paragraphs of
so many words within their own editorial plan. I was not
prepared to work like that so turned down the commission.
I went through test after test after test
preparing for the dual operations.
It was about this time that I joined a
small organisation which provided transport for transplant
patients receiving the call to hospital where an organ was
waiting for them. Shortly before Christmas we received a
call. A little boy was being flown into Heathrow from
Ireland, we were to meet him and take the family to Guys
Hospital. With blue lights flashing and the siren wailing we
raced through the West End of London with our precious
passenger on board.
I have said how I was supported with love
from Leon School, love from the headmaster to my teenage
students. As the time for my becoming a live donor
the board of governors voted to give me three months paid
leave, if I needed longer it was there for me. They brought
in a former deputy head to take my classes. They appointed a
senior member of the school staff to take over my duties as
Head of Year. He decided he was not going to have things
done he way I operated my year group, there would be
discipline, no more larking about as I had fun to move
students along their days and achieve their best. My teenage
students revolted and gave him hell. This moved into my
classes where the former deputy headmaster and firm
disciplinarian moved from one riot in the classroom to
Final preparations were being made at
Guys Hospital. I went down for the final meeting ahead of my
being admitted the next day. All was set for the television
documentary, it was set for all the filming equipment to be
sterilised and the film crew had passed medical
Geoff wants a word, I was told,
he says can you wait until he comes out of theatre.
Maureen were shown into the little side
room where medical staff always put parents when there was
either bad news or a difficult decision to be made. I knew
what was happening, after weeks of tests and preparation the
dual operations were being cancelled. Maureen who was with
me said I was wrong but I knew I was not.
We waited for more than an hour until
transplant surgeon Geoff Koffman joined us. He came into the
room still wearing his surgery robes, his mask about his
still wearing clogs. The operations were indeed being
cancelled. After hours of agonising the team decided the
chances of Rebekah rejecting my kidney were too high,
although a person can live perfectly well with a single
kidney it was felt the chances of failure were too high, the
risk to my health made the operations unethical. I
pleaded, I begged but I could do nothing.
I was devastated, utterly devastated. I
drove home in silence. That is the closest I have come to
having a nervous breakdown. I did not go out of the house
for two days. I contacted Leon School and explained
what had happened, I was told to take as long as I liked and
only to return to work when I was ready.
The former deputy head, who could have
demanded the school honour his three month contract, left
and returned to retirement. The member of staff who taken
over managing my year group said: They are your !
They won't listen to me ! I want nothing more to do
with them !
Three hundred teenagers were seated in
the school hall as they waited for assembly. They were not
expecting me to walk through the door. As I walked down the
isle to the front I could hear voices mumbling, I can still
hear them clearly. He's back, why is he here ? When
the news spread about what had happened those teenagers
wrapped me in their love. I will never forget that.
So Rebekah went back on call for a donor
organ. With two failed and my being turned down as a live
donor it would have to be a very close match. We waited
and we waited. it was around this time that there was a
suspicion Rebekah may have an appendicitis at some time in
the future, this could not be allowed to risk a future
transplant so it was decided to remove her appendix. World
leader in paediatric transplant surgery, Geoff Koffman,
said: I'm not having anyone else going in there, I will
do the operation. He did ! There were smiles about Guys
Hospital as medics put their tongues in their cheeks to ask
if Geoff remembered how to undertake such a minor procedure.
I took Peter and Matthew to California,
Beck was too ill to travel so Maureen took here to Somerset.
Our time in America was great. We drove way up into the
California Redwoods, the world's tallest trees. We spent
time in San Francisco, Yosemite Park, the Nevada Desert,
South Lake Tahoe, Virginia City. In Los Angeles we went to
Disney Land and to Universal Studio, we went to San Diego
then crossed into Mexico to spend a day in Tijuana. From Las
Vegas we flow the Grand Canyon. It was a very full two
I had driven overnight to Los Angeles,
crashed out on Santa Monica Beach then flew overnight back
to England. Landing at Heathrow I was met by a friend
who said: You are not to worry, Rebekah had a transplant
yesterday. I will take you straight to the hospital.
My reply was: Can I go home and have a bath first !
The bleep had gone off while they were in
Somerset. Maureen drove back to Milton Keynes where the
little transplant ambulance charity I was involved in took
them to Guys Hospital. When I saw Beck the first thing she
said was: Look Dad my legs are pink. In renal failure
her body was all white.
But just as before her strong immune
system started to reject the kidney. We were taken into the
little room where Consultant Sue Rigden explained the only
chance to save the kidney, it was a desperate measure. The
plan was to take all of Rebekah's blood out of her body via
a tube inserted into her heart, the blood would be passed
through a dialysis machine to filter out white blood cells
then flow it back into the heart. By lowering her immune
system it was hoped rejection could be stemmed.
But if she catches a cold,
Consultant Sue Rigden said.
You will treat her, I interrupted.
That's the point, Sue said, we
will not be able to.
Maureen and I knew what Rebekah would
want so we agreed to the life-threatening treatment.
Hours went by, then days and still Beck
was rejecting the transplant. Biopsy after biopsy was
performed. Things were not looking good. Rebekah was in a
ward on floor nine of Guys Tower. Guys Tower today is
adjacent to and dwarfed by The Shard. I was walking to the
lift on the ninth floor to go down to ground level and buy
something from W H Smith. As the lift doors opened Sue
Rigden came out, she beamed at me and said: Isn't it
wonderful news ? I must have looked blank fore she
then said: Haven't they told you ? NO SIGN OF REJECTION !
Rebekah's kidney and her life had been saved, saved by
that wonderful team of skilled surgeons and medics.
Progress was slow but certain, Rebekah
would lead a full and happy life. As a family we moved into
Ronald McDonald House, we were one of the first families to
benefit from the very first Ronald McDonald House in the
country. Again Leon School was so loving and supportive to
me. I would commute from London to Bletchley for work !
Guys Hospital had its own school for
children who were in hospital. That inspired Rebekah to want
to work with children. Leaving school she went to Milton
Keynes College and qualified as a nursery nurse. She went on
with home study to gain many more qualifications. She became
a member of staff at the crèche then located in Safeways
Supermarket, now Morrissons, at Westcroft in Milton Keynes.
When the supermarket closed its crèches she went to work at
the crèche in The Centre MK where she became Deputy Manager.
She worked at Broughton Manor Prep School and
Little Houghton Day Nursery.
She married Gary, a great man and someone
I am proud to call my friend. It is joked that Beck taught
Gary about shopping and he taught Beck about football. Gary
is a Sheffield Wednesday fan and now so am I. I love my
visits to Hillsborough and am proud of the little
sponsorship we have at each game.
The years Beck was married to Gary were
so happy but he transplanted kidney which she always called
Louise was losing its function.
It was not going to be easily possible
for Rebekah to have another transplant, he already strong
immune system had been made even stronger by years of
anti-rejection medication. It was considered that I could
again go forward to be a live donor but again medics would
not pursue that course of action. She was again in and out
of hospital, attending clinics in both University Hospital
Milton Keynes and Churchill Hospital in Oxford. On one
occasion I either drove her to a clinic or visited her in
hospital every day for four weeks.
Knowing my love of music, Beck would get
into my car and say: I don't mind if you play your
music Dad. Mind or not I was going to play it.
Her text messages to me always began:
I am sorry to be a pain but...............
Rebekah died suddenly and unexpectedly on
Friday 19th May 2019. She would have died as a small child
had it not been for the skills of her medical team and the
love of a family whose little boy died tragically. They
donated his organs among them Rebekah's kidney Louise.
Rebekah's consultant was Doctor Phil
Mason. When she died he said to me: I do not treat my
patients, I care for them. Throughout Rebekah's life
that was how she was looked after - the medication treated
her, the doctors and nurses cared for her. Isn't that how it
is throughout our National Health Service. I love our
NHS and I have been a passionate supporter of University
Hospital Milton Keynes since the day it opened its doors.
This is not a transplant centre but it is the first port of
call for those in the area who will intimately need a
Going way back, Elizabeth Ward said to me
she could imagine a time when a physical donor card would
not be needed, it would
natural for people to donate their organs. Very son a new
law will come into effect saying it is assumed you will
donate your organs on your death unless you have
specifically said you do not wish to. Families will have the
power to say NO to donation. Thank goodness that family who
had lost their young son did not say no to Rebekah's kidney
Louise. This law will ease the situation but it will not
solve it. When a family is in tragedy it is not easy for
them to focus thoughts on organ donation.
As you have read, organ transplantation
is something I have been around for more than thirty years.
I do my bit to raise awareness of organ donation but I am
not certain how effective I am. Do you believe in Destiny ?
I have spent three days writing this page on the website and
as I am now coming towards the end I can feel Destiny
tapping on my shoulder.
I put the television on to watch the
news. There was a feature telling a lovely story. It is a
fact that if you are an Afro-Caribbean or Asian person your
chances should you need a transplant are close to zero,
there just are not the donors. This news item told of an
Islamic mother, she was a GP, whose child needed a
transplant but within the Islamic community organ donation
has mixed feelings. Her father was Imam of the local mosque.
They were able to find a life-saving donor for the child.
Perhaps in raising awareness of the need for donors special
emphasis needs to be put to help Afro- Caribbean and Asian