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.

Lorna

Ann-Marie’s Story

"Leon was born on the 8th January 2002 in the Causeway Hospital Coleraine. It was a normal pregnancy, unlike that of his older sister Robyn who was born 6 weeks premature.

When Leon was born his birth weight was 7lb 3oz and at first everything seemed fine. The midwives gave him his first bottle and he was brought to my bedside. It wasn't until a few hours later when Leon was still sleeping longer than he should have, that there was any concern he might be ill. The midwives wakened Leon and tried to give him another bottle but couldn't keep it down and when they tried to tube feed him, he kept vomiting. The hospital ran a few tests but they couldn't find any answers so the decision was made to send him to Antrim Area Hospital.

I had just had a caesarean section and could not travel with him, so I had to watch my baby be put into an incubator and taken from me just a few hours after giving birth.
Leon was transferred to Antrim Area Hospital were a cardiologist diagnosed him with a Congenital Heart Defect. He was then taken to Royal Maternity Neonatal unit and I was transferred by ambulance to the Royal Maternity. Leon was diagnosed with Hypoplastic Left Heart, meaning that one of Leon's pumping chambers is smaller than the other.

Leon had his first open-heart surgery when he was only 6 days old, his next open-heart surgery was when he was around 8 months, and again when he was 3 years old.

Leon's most recent open- heart surgery was on the 25th June 2008. This time he had complications due to persistent draining. He stayed in Clark Clinic for 7 months, during which time he had numerous drains put in and numerous surgical procedures.

Near the end of December 2008 Leon had to go back to theatre and this time he was very sick. The cardiologist and surgeon decided that Leon needed to be in intensive care and go on a ventilator to give his lungs a chance to rest and in the hope that the drainage would stop.

On the 26th of December Leon came off the ventilator and was doing well breathing on his own. His fluid had started to stop draining, and he was moved back to Clark Clinic where he made slow but steady progress, finally being discharged from the ward on the 23rd January 2009.

I was able to stay in the Heartbeat accommodation the entire time Leon was in Clark Clinic. Living in Coleraine, I was so grateful for it as it would have been very hard and tiresome to travel up and down the hospital. The accommodation gave you that comfort that you were not too far from your child if the staff needed you, but it also gave you the chance to have a break. I was there for 7 months and there were times when I felt overwhelmed and completely drained and really just needed that space to get myself together.

The staff at Clark Clinic are fantastic. I couldn't have asked for better care and support. They helped me through difficult times and were always there for me when I shed so many tears. It got to the point where I felt like they were my second family, and I know they helped me cope with things that my friends and family could never imagined that Leon and I went through.
Leon loves to going back to Clark Clinic and seeing all the staff again!

Leon received outstanding care at the Clark Clinic, and it's a fantastic reflection on the Clark Clinic staff, the consultant cardiologists and Mr Gladstone the surgeon, that my son is doing so well today and is leading a full life.

We have been home a year now and it has been difficult at times. Leon going back to school was a major worry because he had missed so much, but he has coped really well with being in primary 4 and is doing well with his school work. The staff at his school really helped with the transition and now it's as if he has never been away!

Family life was another worry - because I had been away for so long from my daughter Robyn, I feared she may be slightly resentful, but she was amazing and still is. She did her best with a very difficult situation and understood that her mummy had to be at the hospital with her little brother. She just wanted Leon to come home well.

Along with all of that we had to make sure Leon got his mountain of medication, but thankfully now he has been weaned off some and life is nearly back to normal.

As a family we never forget what happened in 2008 in Clark Clinic, with Leon having to go through so many procedures. However we take about it openly, and realise that we have made many good friends for life, people like the staff and other families we met on the ward. The journey wasn't pleasant but now we are out the other side.

I would just like to take this chance to thank all the staff in Clark Clinic and Dr Craig, Dr Sands, Dr Casey and Mr Gladstone. You were all wonderful and so kind to me, Leon and Robyn.