Why we owe heartfelt thanks to medics in Northern Ireland
Belfast woman Alana Hall thought she may never be a mum, having been born with heart disease, while Bridget McGinty from Rasharkin feared for son John Martin's life when he was born with the condition, writes Karen Ireland.
'I was warned I could die giving birth... but now I'm truly blessed with my Lewis'
Alana Hall (33), a stay at home mum from Belfast, is married to Darryl Hall (33), a chef. They have one son, Lewis (16-months-old). She says:
I have had heart problems since I was born. When I was delivered I went into cardiac arrest and had to be taken straight to theatre for treatment.
A corrective procedure was carried out to fix valves. There wasn't as much technology then as there is now but the doctors saved my life.
The condition I suffer from is transposition of the greater vessels of the heart, which is congenital, so I have always had issues with it.
I suffered another cardiac arrest, again when I was a baby, and had to have surgery and a pacemaker fitted when I was one-year-old. Since then I have had a further four replacements fitted.
When I was eight I was so active I pulled the wires out and I had to go back into hospital to have it replaced.
I've had so many surgeries I think nothing of it now.
At school, I was never allowed to do PE because of my condition. I couldn't risk getting out of breath or damaging my heart. So, in my eyes, I have always been that little bit different and couldn't do the same sort of things as other children.
I didn't want to be thought of as sick, though, so I tried to just get on with things.
When I was at school I got a job in a cafe and tried to be as normal and active as I could, but I always tired easily.
After school I studied childcare and went to work in a nursing home. I knew my limits, though, and understood when I had to rest.
Consultants had never really discussed my options about having children so, when I met Darryl, it wasn't something we talked about at length initially. We really didn't know if it was an option for us at this stage or not.
Out attitude was, if it is meant to be it will happen. We met in 2005 and married in 2013. And around this time I started to feel really tired and tests showed my heart was swollen.
I went to Newcastle-Upon-Tyne to see the heart transplant team for an assessment as it was thought to be my next option.
When we were there, Darryl and I were told we would never be able to have a baby as my heart wouldn't cope with it, and a pregnancy would make the need for a transplant more urgent.
The heart specialists were matter of fact about the news, and it was difficult to hear that.
We were told about other options such as IVF and surrogacy. We came home and found out about IVF but realised the cost of it would put a huge strain on us financially.
When I discussed having children with my consultant here, he didn't seem to think there was any real reason why I couldn't get pregnant.
This was the time when, under doctors' orders, I had to leave work as it was putting too much strain on me.
I started to rest more and look after myself. We talked to the doctors for six months about the prospects of a pregnancy.
I was warned of all the complications and told I could die giving birth as my heart could stop.
While it was a risk, it was worth taking and I wanted to try. I believe I was given a second chance when I was born. I'm not supposed to be here but I survived. I'm here for a reason, so I believe in pushing myself as much as I can.
We had lots of meetings with the cardiac team in the maternity department and we decided to go for it. Three months later I found out I was pregnant and we were ecstatic - cautious but delighted.
My pregnancy went well until at 27 weeks when I got chicken pox and pneumonia.
I was very ill and in hospital for a week but then recovered enough to go home. However, it turned out the placenta was infected and the baby was in distress, so I was admitted to hospital for a complete rest. Three weeks later, when I was 29 weeks and four days pregnant, Lewis was born.
We were terrified as he was so early but, apart from that, he was perfect - and a real miracle. He had to stay in hospital for seven weeks to grow and learn to latch on, but after that we were allowed to bring him home. He has no heart problems and is now a bubbly 16-month-old.
He keeps me going. I am very lucky in that my husband provides us with such amazing support. Friends and family, too, are always happy to help out if I need to rest, although I find just sitting playing with Lewis very relaxing.
He is a good child.
I am on beta blockers and blood pressure tablets and they seem to be keeping my condition stable. The doctors are happy with me and I have a fantastic team at the Royal who I can contact at any time.
As long as the tablets continue to work I might not need a transplant for many years to come.
The medical team's decision to bring me out of work allowed me to concentrate and follow my dreams and now I'm a mum which I never thought would happen.
I am truly blessed and life is wonderful."
‘It was consultants at the Royal who saved John’s life’
Bridget McGinty, (27) a stay-at-home mum from Rasharkin, is engaged to John Gray, (29) a full-time carer to their son. They have three children, Eunan, (7) John Martin, (3) and Sarah Jane, (18-months-old). She says:
Both sides of our families have heart problems. Despite this, when John and I got together and decided to start a family it was one of those things we thought would never happen to us.
I have three brothers and three sisters and it didn’t happen to any of us. So we didn’t even think about it.
Our first son, Eunan, was born perfectly healthy, but when I was pregnant with John the doctor thought he looked a bit small. At my 20-week scan the doctor thought they’d picked up on an issue with his heart, but we were told we’d be brought back if there was a problem. When we weren’t, we thought everything was fine.
I was induced at 39 weeks and when John was born he was bright blue. The doctor told me he had a congested nose and it would settle, so we were discharged after a day and a half.
A few days later, though, all his midwife checks were okay — but he was still bright blue. On the midwife’s last visit she put him on the scales and he turned a purple colour and I started screaming and couldn’t stop. John also couldn’t get a breath.
We took him to the Causeway Hospital in Coleraine immediately where specialists worked on him for hours. It was so frightening waiting outside and not knowing how he was doing. He was only two weeks old and so tiny — we were beside ourselves with worry.
Eventually we were told John may have something wrong with his brain, so he was transferred by ambulance to the Royal Victoria Hospital in Belfast.
Our little baby was put in an oxygen pod and when we arrived in Belfast the specialists had ascertained the problem was with his heart. John had a condition called tetralogy of fallot, which meant there were a number of things wrong with his tiny heart. He had a narrowing of his arteries and a hole in his heart which meant he wasn’t getting enough oxygen around the body.
We were heartbroken and kept looking at our gorgeous wee baby thinking everything should be fine — he should have been born fit and healthy.
As a mother I felt guilty and worried if it was anything I had done. We realised in those first couple of weeks his condition could have been fatal as we didn’t know what was wrong. But, as it was congenital, it was no-one’s fault and there was nothing we could have done to prevent it.
From those early days we have had to adapt to the fact that John’s heart condition is unfixable and we have to manage and maintain it.
As he got older we had to learn that he cannot over-exert himself. He couldn’t run around a lot or get over-tired, we had to watch his diet and his oral hygiene. A simple toothache could lead to an infection and he could end up in hospital. He is on aspirin every day, so even a cut could lead to a big bleed, but you can’t wrap a three-year-old in bubble wrap, can you?
John tries to keep going, but when he started nursery he got so tired that we had to reduce his hours.
Looking after him and ensuring he is okay is a round the clock job. Meanwhile, we are careful that our other children don’t feel left out.
John is constantly monitored and has had to have four surgeries so far. In a few weeks we will have to go to Birmingham, as he needs two stents put in and open heart surgery.
Of course we worry about him. We worry every day and we worry about Eunan and Sarah Jane at home.
This will be the first time I have left her since she was born.
John attends the Clark Clinic in the Royal and they are fantastic. He loves it there and all the doctors and nurses know him and are wonderful with him. He loves it when we say he is going to the hospital in Belfast.
I believe we owe our son’s life to the consultants at the Royal. They diagnosed what was wrong with him and saved his life.
The Children’s’ Heartbeat Trust there are fantastic. They offer not just emotional, but practical and financial support as well.
They have made a huge difference to all our lives.”