Paper cut out of family on a table next to a red heart and stethoscope

I’m Donna. I’m 49, married, with 2 children; nothing out of the ordinary there – but everyone has a story to tell and this is mine…

When I was born in 1967 ante-natal scans were uncommon, so when I was turning blue when feeding at 3 months old, and the Cardiologists at Birmingham Children’s Hospital told my parents  I had a complex cardiac condition it came as quite a shock.  In fact, the only reason I survived was because my patent ductus remained open – usually it closes shortly after birth. They were told I would be doing well if I survived to the age of 5! I became known as the ‘girl with the blue nose and lips’.

At 9 years old I had a Glenn Shunt between my heart and lungs to get more oxygen around my body. After this operation my parents were told that on opening me up it was all more complicated than the surgeons first thought, and they would just have to see how I managed. In those days the Children’s Hospital was based at Ladywood, Birmingham and to go down to the operating theatre you were taken outside. Also you didn’t go to Intensive Care, you simply returned to the ward (chest drains and all) with your bed situated close to the Nurses’ Station.

Throughout my school years it was clear that I could not take part in P.E.; before my surgery I even struggled at playtime, especially in the winter months, and spent most of my time in the classroom reading – by the time I left primary school I had probably read every book in the school library! At no point in my school life did I receive any extra support, and I do remember feeling very breathless every time I got to the top of the stairs when I was at senior school. I also recall the time my class had to walk across the fields to the local sports centre where sports day was being held; we were told to run, so I did… and collapsed under a tree! The teachers were very careful not to repeat that incident!

After I left school I went to college and then started working in a General Practice as a Medical Secretary.  I also met Andre, who is now my husband, and life continued on.  I had learnt to manage my heart condition, and although I got more tired and breathless than other people, I feel I tried hard to not let it interfere with anything I wanted to do.  It wasn’t until I suffered a TIA (Mini-stroke) that my Cardiologist at that time suggested that there was a new operation available, the Fontan, which could help me. At the time I was 22, and really just wanted to get on with my life, but after the advantages were explained to me, in particular that it may give me a chance to have children, I decided to go for it!

For the first time the complexities of my condition were explained to me: the fact that I had transposition of the great arteries, ASD, a single ventricle – ‘half a heart’ and no tricuspid valve (tricuspid atresia). I was told that I was part of the first generation with my condition to survive to adulthood.

I had my Fontan June 1990, in the middle of World Cup fever! Personally I was hoping to spend the whole tournament asleep, but after a stint in ICU, which included being rushed back to theatre for a burst blood vessel, I returned to the ward. Lying in my hospital bed, feeling very uncomfortable from my chest drains, my Mum read from my notes that I ‘had been slow to warm up’. My Dad turned to my then boyfriend and asked if that was true… poor bloke didn’t know where to put himself!

My Fontan certainly did improve my health – for the first time I was pink, and my breathing was so much better.  Andre and I got married, and then we wanted to start a family. Since my surgery, I had been on Warfarin so I knew that pregnancy was not going to be easy. Dr Wright referred me to a very eminent Cardiologist, Dr Jane Somerville, at the Brompton Hospital thinking she had experience of single ventricle patients having children. However, during our consultation she remarked, “Well I’ve never had any one with your condition have a baby, but I really think you should try!” So we did! In no way can I say my pregnancy was uneventful, with a long stay in hospital, episodes of bleeding and constant scans, but in January 1996 our son, Nathan, was born. A few years later, when I was unexpectedly pregnant again, I informed the doctor about to carry out my echocardiogram that I was about 10 weeks pregnant; “Fontans’ don’t get pregnant” was his reply. Imagine his surprise when I told him I already had a 7 year old at home! During my first pregnancy I was still under the Children’s Hospital, as there were no Adult Congenital Heart Units, but by the time I had Cerys, our daughter, I was under the team of adult specialists at the QE Hospital, Birmingham.

It is this team that 4 years ago, when I was struggling again, and there was talk of a heart transplant; picked me up, sorted me out and put me back on my feet again to carry on with my life.
Obviously life isn’t perfect; my cardiac condition impacts on how much I can do, especially as I get older (and at 49, apparently I really am an old Fontan!), and both my children have Cerebral Palsy and are full time wheelchair users, but we enjoy life. My son is now 21 and at university, and my daughter is 13 and very creative. We are very proud of them both. We have a family motto that “in order to be irreplaceable, you have to be different” and we certainly are unique.

When I was growing up, my parents and I didn’t have a supporting charity like Little Hearts Matter, a charity that offers advice and support to all single ventricle Parents, children and young people. It is wonderful to see that support is now available. Similarly, as I have got older I have also had contact with the Somerville Foundation, and through it have found other single ventricle oldies – just like me! As well as adults with other congenital heart conditions who are living their lives and enjoying the adventure.

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