Robert Plotnek - My Life As A Heart Child

I was born on 21st December 1989 at St Georges Hospital in Tooting, London.
My midwife quickly spotted I had a heart problem and the doctors at the Brompton (National Heart Hospital) confirmed this a few days later. I had Transposition of the Great Arteries (TGA), a Ventricular Septal Defect (VSD) and pulmonary stenosis (narrowing of the pulmonary valve).
My mummy and daddy called me Robert Henry Shelgate. Robert was after my great grandfather, Henry after my great uncle and Shelgate after the road I was conceived in (so daddy says!)
I had my first heart operation (a BT shunt) at four months of age at the Brompton Hospital.
My mummy and daddy moved back to Birmingham in the Spring of 1993 and my cardiac care was entrusted to the Birmingham Children's Hospital. In September 1993 I started at Hallfield School in Edgbaston.
I had my first heart repair operation in the spring of 1994 when I was four years old. My surgeon was Mr Bill Brawn, and he has taken great care of me over the years. Unfortunately I suffered a bout of endocarditis (infection of the heart lining) a few weeks later and had to be re-operated on. In the December I had my third operation which appeared to have worked very well.
Unfortunately I again developed endocarditis in June 1995. I became very ill as I then developed septicaemia and nearly died. I was in intensive care for three and a half months and by the time I recovered I had had a further three heart bypass operations. I finally left hospital in December 1995.
During my period of extreme illness in intensive care I suffered from prolonged hypoxia (lack of oxygen). This left me with some neurological damage which I recovered from quite well, although I have been left with some walking and speech difficulties. Because of this I had to leave Hallfield and I went to Wilson Stuart School in Erdington, a school for children with special needs.
My youngest brother, Harry, was born at this time so I didn't really get to meet him until I recovered.
In July 1996 I had a hole in the lower chamber of my heart closed with a special umbrella inserted through a catheter in my groin.
In October 1998 Mr Brawn operated to repair two of my heart valves which had been damaged in 1995. Unfortunately the operation (and two further attempts) were ultimately unsuccessful.
My mummy and daddy were told in April 1999 that my only option was to have a heart transplant. Paediatric heart transplants are not carried out at the Birmingham Children's Hospital so I went to GOSH for assessment in May. The consultant and surgeons said it would be very risky but they were prepared to put me on the transplant waiting list.
I had to stay in Birmingham Children's Hospital from October 1998 to August 1999 because my constant treatment meant I could not really go home. During this time I went to James Brindley School, which is a school within the Children's Hospital. The teachers there are really kind.

My new heart finally arrived on 26th August after a fifteen week wait. Hearts are matched on blood group and body size only - there is not enough time to carry out tissue-typing tests! I was rushed by ambulance to Great Ormond Street Hospital in the early hours and my operation started at 8:00am. My surgeon was Mr Martin Elliott.
Because I had had so many operations before there was a lot of scar tissue and the surgeons had to get started and remove my old heart before my new heart arrived. The whole operation took 10 hours. Mr Elliott says my operation was one of the longest and most difficult they have ever done.
I went on home leave eight weeks after my transplant and was formally discharged two weeks later.
All went well until February 2001 when I started to look a bit pale. Grandpa took me for a check-up at Birmingham Children's Hospital on 8th March. They carried out various tests and Doctor Onuzo thought I had a condition called Post-Transplant Lymphoproliferative Disease (PTLPD). I went to Great Ormond Street the very next day for further tests.
Unfortunately following extensive investigations it became clear that due to the immuno-suppression drugs I am on (which inevitably compromise a my immune system) I had contracted lymphoma from the Epstein-Barr virus, a condition commonly called Post-Transplant Lymphoproliferative Disease. My condition steadily worsened during the next two weeks in hospital, despite the chemotherapy, and I was moved to the Cardiac Intensive Care Unit. I also suffered stomach bleeding and had two emergency operations on the 25th and 26th March to control it. These were carried out by the general surgeon, Mr Drake. My chances were put at 'less than 10%'.
Over the course of the following week my condition improved steadily and the chemotherapy was continued (Vincristine and Retuximab). My condition continued to improve and I was discharged home on 13th April. My thanks go to everybody but in particular to my consultant, Dr George Mallory; Prof Phil Rees; my surgeon, Mr Drake; Dr Jackson Wong, research fellow, and all the staff at Great Ormond Street Hospital. Yet another lucky escape!

	Organ Donor Line	Mainstream UK Site with information on organ donation - Tel: 0845 60 60 400
	Australian Academy of Science	An Australian Scientific Site
	TransWeb	A Transplantation and Donation site
	London Health Sciences Centre	A Canadian Hospital site
	The Organ Transplant Ring Pages	Links to other transplant resource and story pages
	The Children's Health Information Network	Information and Resources on Congenital Heart Disease