Family Stories

Lorna’s Story

Lorna’s story was first published in the ‘Heartbeat’ magazine when she was 13. Recently her sister and friends took part in a Sponsored Skydive to raise funds for the charity, and Lorna kindly agreed to update her story as below..

I was fortunate to be treated in Clark Clinic and I actually got my story published in the ‘Heartbeat Magazine’ so I thought I’d dig it out and I now pass you over to my 13 year old self to tell my story ….

When I was three days old, I was diagnosed as having Turner’s Syndrome. This complaint also meant that I had a narrowing of my aorta, which is the main tube from the heart. The doctors at the time told my Mother that I would need surgery eventually, but they wanted to leave it until I was older.

When I was seven months old, we moved to Scotland and over there I attended the growth clinic as this is the main problem connected with Turners Syndrome, you don’t grow properly – although this isn’t a big problem as you can get growth hormone injections to help, and with them I have reached the height of 5 feet and 1 inch.

When I was eleven, we moved back to Northern Ireland, and I went to the growth and heart clinics in the Royal Hospital for Sick Children. Things were O.K. until I was thirteen and the doctors took me into Clark Clinic for a cardiac catheterisation, to see how things were going. At this stage they decided it was time I had my heart surgery.

The surgery was a success and my progress was so good in Cardiac Recovery that I was only in there 24 hours instead of the 48 hours.

From then on I got stronger and stronger each day, and I was feeling a lot better, although my blood pressure soared up, due to all the extra blood getting round my heart. I was put on blood pressure tablets to try and stabilise it.

When I got home, I was still on tablets, and I was extremely tired all the time, but gradually my blood pressure returned to normal and I was allowed to stop taking them.

My story continues 20 years on……….

All was well with my heart until November 2004. I had been diagnosed with Crohn’s disease a couple of years previous to that and I was in Antrim hospital receiving steroid treatment for it, all was going well and I was due to be discharged later that day. I had gone to the bathroom to get washed when I suddenly felt very dizzy. I managed to get back out to where the nurse was standing and tell her “I don’t feel very well” before collapsing….. the last thing I remember is her screaming “can I have help here please”

I have very little memory of the events, but have later learned that I had suffered from an aortic disection, this is a very dangerous, life threatening condition and it requires immediate, emergency attention. A dissection is when the innermost layer of the aorta tears and blood pours in causing the aorta to swell and tear even further. They managed to stabalise me on the ward by pushing pints of blood in to me. I was taken to ICU, but they had to keep reviving me. I was rushed to the hospital in Belfast where I endured 6 hours in open heart surgery. My family were told I had a 7% survival rate prior to my surgery. They aren’t entirely sure what causes it although having Turner’s syndrome and a narrowing of my aorta predisposed me to having a dissection.

Five years on from my dissection my heart is doing ok. I have twice yearly checks on the aorta to make sure all is holding its own. The surgery they did to repair the dissection wasn’t complete as I wouldn’t have made it off the table, so there is still a bit of my aorta that hasn’t healed. I also have a bicuspid aortic valve which is leaking so I will probably need more surgery at some point in the future.

My story is one among thousands and as more sophisticated screening takes place during pregnancy, more babies who have a congenital heart condition are being diagnosed and treated. This is when Children’s Heartbeat Trust shines. The quiet, invaluable support they give to parents, patients and to Clark Clinic is absolutely vital… So that is why we need to keep the beat in Heartbeat.

The Skydiving Six (l-r Brian McDonnell, Robert Jones, Ian Gorham, Siobhan Allen, Kerry Jennings and Gillian McIlreavey) are happy to have their feet back on the ground as they surround Lorna Smith who inspired their fundraising for the Children\’s Heartbeat Trust.