'The only way forward for me now is to get a new heart' – Woman (27) with two heart defects in need of transplant
Every year up to 600 babies in Ireland are born with a congenital heart defect. The condition can be genetic or due to a viral infection during pregnancy, but quite often it isn’t clear why it occurs.
This was the case for Nicole Slattery, who was born with not one but two heart defects and says her early life was hugely affected by being unable to take part in normal childhood activities.
“When I was born I was what is known as a blue baby as I had two heart defects,” says the Limerick woman. “These days there is a 95pc survival rate for babies with conditions like mine but it was lower back then so I was lucky to have undergone a successful operation at six weeks and then further surgery at six years of age, another when I was 10 and a further one aged 11.
“These procedures really helped me to live my life but I wasn’t able to do a lot of stuff that other children could do – I missed out on sport because I just wasn’t physically able to do it and I did have a lot of appointments and hospital stays during my life. But my parents were amazing and really did their utmost to treat me like they would my three sisters, so they kept my life as normal as they could.”
The operations she underwent in childhood meant that the now 27-year-old could enjoy life as much as possible – but in recent years, her health has worsened.
“I did everything I could to live as a regular teenager,” says Nicole. “In my twenties, I was a bit wild and enjoyed nights out and holidays with my friends and family. I also went to college and trained as a make-up artist and hairdresser, so I didn’t let my condition hold me back.
“But as the years have gone by, things have slowly got worse as the effects of my operations have worn off and now I struggle day-to-day and have had to stop working because I just don’t have the energy or the ability to do very much. I have very poor lung capacity and am on oxygen all the time but can still walk, thank God, as I would find it very difficult if I was bed bound.
“I can also drive, but I have to plan things out very carefully and make sure I am kind to myself – so, if I meet people or go out of the house four times a week, I will make sure that I have three full rest days or else I know something bad will come down the line very soon.
“My heart condition has also left me with stage three liver disease – so the only way forward for me now at this stage is to get a new heart.”
Nicole’s heart is struggling to keep up and is currently working with just 15pc function – this means that the only option open to her is a heart transplant and she is now working to get herself into shape so she can be approved for the transplant waiting list.
“The only thing available to me at the moment is a heart transplant but because I am not very mobile, I need to lose four stone before I can be considered for the waiting list and that is going to be tough,” she admits. “I have been advised to go on a 1,200 calorie a day diet but because I also have polycystic ovaries and thyroid problems, getting the weight off is going to be hard, but I can only do what I can do and hope for the best.
“Then, if I make the list, it’s a question of waiting until an organ becomes available.”
READ MORE: ‘I asked if my child was going to die’ – Mother’s harrowing journey to bring daughter back to health
Having been cared for by the cardiac clinic at Dublin’s Mater Hospital for her entire life, the young woman will hopefully soon be under the care of the transplant team and wants to show her gratitude to the staff who cared for her down through the years.
“I really want to give something back to the cardiac clinic before I transfer to the transplant team,” she says. “They have looked after me so well since I was a child and I want to show my gratitude. I organised a fundraising table quiz in my local rugby club in May where I hoped to raise €1,000 but in actual fact we raised over €6,000.
“The people of Limerick were amazing and really came out in force to help by taking part and offering spot prizes – I was overwhelmed by their generosity.”
Nicole adds: “One out of every 100 babies will be born with a condition like mine and while there is help out there for them, the real issue lies with there not being enough funding for the adult patients.
“And this is why I want to help out – the staff in the Mater Hospital really go over and beyond to help people like me and I would love if they could get the funding they need to continue to offer the best care.
“I am here today thanks to what the doctors and nurses did for me, so if anyone wants to help out, there is a link on the Mater Foundation website under my name. I don’t know what the future holds, but I am feeling positive and I want to do all I can to thank those who helped me.”
Consultant cardiologist Dr Angie Brown says while congenital heart defects like Nicole’s aren’t very common, they are present in up to 600 newborn babies in Ireland every year. But advances in medical science have meant that many will be eligible for successful treatment.
“Congenital heart defect (CHD), also known as a congenital heart anomaly and congenital heart disease, is a defect in the structure of the heart or great vessels which is present at birth,” she explains.
READ MORE: ‘My heart is getting very tired – I need a transplant’ – Mother-of-two (47) hoping for ‘brighter future’ with her family
“The most common is ventricular septal defects (VSD) which are small to large-sized holes between the lower chambers of the heart. Atrial septal defect is another common congenital heart defect which is an abnormal hole between the upper two chambers of the heart, in the area known as the atria.
“CHD affects nearly 1pc of births and signs and symptoms depend on the specific type of defect, varying from none to life-threatening. When present, symptoms may include rapid breathing or breathlessness, bluish skin (cyanosis), poor weight gain and feeling tired. A complication of CHD is heart failure and the effect on the patient’s life will vary a great deal according to the severity of the defect and the results of the treatment.
“Treatment and prognosis depend on the birth defect, however surgical techniques and percutaneous interventions have improved a great deal and children with congenital heart defects can do very well following treatment. And more than 90pc of infants born with a congenital heart defect live into adulthood in the current era.”
⬤ Every September, the Irish Heart Foundation runs an awareness raising campaign for the public with an emphasis on one of the main risk factors which can lead to heart disease and stroke, such as high blood pressure, high cholesterol, physical inactivity and excess alcohol consumption.
This year, the campaign aims to raise awareness of the risks of a sedentary lifestyle and motivate people to move more and sit less. This September, visit irishheart.ie for ideas and tips on how to move more in your workplace and community, and how to participate in the Heart Hero 5k on Saturday, September 28.
Heart health: the facts
⬤ In Ireland the most common heart conditions (amongst adults) are ischaemic heart disease, hypertension and an increasing incidence of heart failure as well as newly diagnosed congenital heart disease in adults such as bicuspid aortic valves, which can be diagnosed with a heart scan, often picked up when a doctor listens to the heart and hears a murmur.
⬤ To keep a healthy heart, it is important for people to get their blood pressure checked (as most people have no symptoms apart from high blood pressure), get their cholesterol and blood sugar checked, stop smoking and take regular exercise.
⬤ Treating any of these risk factors reduces the chance of suffering a heart attack or developing heart failure. If you have any symptoms of breathlessness or chest pain, it is very important you see your doctor and if you think you might be having a heart attack, dial 112 or 999 for an ambulance to go to the emergency department.
⬤ The World Health Organisation states that 80pc of premature cardiovascular disease cases are caused by an unhealthy lifestyle and making positive lifestyle changes can improve heart health.
⬤ To donate to Nicole’s fundraising effort, visit materfoundation.ie
Source: Read Full Article