Fiona Fallon knows all about the affairs of the heart. The 41-year-old teacher from Strokestown in Co Roscommon underwent open-heart surgery at the age of 4 to correct a congenital heart defect. Today she is the mother of three children, two of who were also born with congenital heart disease.
Congenital heart disease occurs in 0.8% of all births and in Ireland accounts for 13.2% of infant deaths from congenital malformation. Congenital means the condition is present at birth.
Fiona’s second son Isaac was born with 2 holes in his heart. Just as he was about to undergo surgery doctors discovered that the holes had spontaneously closed which meant he didn’t need the procedure. However, when Anna, Fiona’s youngest child Anna was born in 2019 sadly she wasn’t that lucky.
Fiona recalled that Anna’s heart condition was diagnosed in the womb and she was therefore somewhat prepared that her baby girl may have to undergo some surgery to correct it. What she wasn’t ready for, however, was the fact that Anna arrived 2 weeks early and had to be rushed to Crumlin Children’s Hospital at just a few days old for open-heart surgery.
" It was panic stations, her aorta was extremely narrow, circulation to the body wasn’t possible, she had to be put on sedation and a ventilator,”
“When she was born on Saturday night at 8 pm she seemed well at first. The nurses and doctors were monitoring her and they found her deteriorating rapidly the day after she was born. In the early hours of Monday morning, 36 hours later, she had gone really cold, wasn’t feeding, and was transferred to NICU. The cardiologists in Crumlin were involved and she was rushed to Crumlin by ambulance. It was panic stations, her aorta was extremely narrow, circulation to the body wasn’t possible, she had to be put on sedation and a ventilator,” Fiona recalled.
What followed for Fiona was every new mother’s nightmare. Anna’s heart condition was found to be incredibly complex and very serious, and over the next seven months, she underwent three open-heart surgeries and one catheterization.
“She had two open-heart surgeries within her first 10 days of life. She was only 2.5 kilos when she was born, they were working on a heart the size of a strawberry. She was a tough little baby to survive it but it was a very traumatic time,” Fiona said.
Fiona who herself was still recovering from the birth stayed in Crumlin with Anna for six weeks while her two young boys were being cared for at home in Roscommon.
After six long weeks in Dublin Fiona was finally able to bring her new baby home however she only had 6 weeks at home before Anna needed another operation.
“She had two open-heart surgeries within her first 10 days of life...they were working on a heart the size of a strawberry."
Fiona recalled that every time she took Anna for a check-up in Crumlin she always took a packed suitcase just in case Anna needed to be admitted, and she was living on tenterhooks the whole time.
Fiona was right to pack the suitcase as Anna was admitted again after a checkup in September and was listed for more surgery. Unfortunately, however, the lack of ICU beds meant that her surgery was postponed and she was sent home to wait for a date.
“It was a long worrying time. I didn’t know what was going to happen to her. Was she going to die at home when I was trying to mind her, tube feed her, and give her medications 13 times a day? Like many Heart Families, we were waiting for a paediatric cardiac ICU bed to become available and that was very distressing. I was at my wit’s end at that stage,” Fiona said.
Anna finally had her biggest operation on the 4th of November 2019 and since then she has thankfully thrived. Now almost three she is both meeting and exceeding all her developmental milestones. While Anna will need more heart operations in the future, for now, Fiona said she was focusing on the present.
“I am trying to live in the present and enjoy every day with Anna and her brothers too. I try not to forget about them in the midst of all this, they are just normal little boys growing up with all this extra uncertainty and they worry about Anna too.”
“I found a sense of support from the Irish Heart Foundation,"
Fiona said she was eternally grateful to the Irish Heart Foundation for all the support she and her family received over the past three years, and in particular during the Covid-19 lockdown periods which she said were extremely difficult.
As a way of expressing her gratitude, Fiona has signed up to the Irish Heart Foundation’s 5km Love Run which takes place over St Valentine’s weekend.
“I found a sense of support from the Irish Heart Foundation, during lockdown their website was great for information and updates, and being able to call the nurse line was a great reassurance,”
“We were really cocooning for most of it and isolating from everybody, I am really lucky my parents live next door so we formed a bubble with them that was a big help…but it was very monotonous not seeing people ….not having the freedom even to go to the supermarket …Lockdown was tough.”
While she is participating in the Love Run to say thank you to the Irish Heart Foundation for being a lifeline during the pandemic, Fiona said she was also taking on the 5km for herself.
“I want to get back into running. I used to love running before I had Anna. When she was 8 weeks in the womb I was doing an 8K that was the last time I did a proper run ….it was something that I really missed when I was in Crumlin with her, it used to be a great stress reliever,” Fiona explained.
" If Anna was born when I was born she wouldn’t be alive today,"
Asked what advice she would have for other parents faced with a newborn with complex congenital heart disease Fiona said it was to trust the medical staff and talk to other parents.
“The doctors and nurses can do amazing things, try not to despair because it might seem like the end of the world but it’s amazing how things can turn around… if Anna was born when I was born she wouldn’t be alive today, there have been so many advances…don’t give up, try to stay positive, and don’t look too far ahead,” she advised.
“Reach out and talk to other heart parents, it was a great relief to know that other people are on this road and other people have survived it” Fiona added.
Finally, Fiona said she would encourage all those who can, to take part in the Irish Heart Foundation’s Love Run.
“Do it for those who are unable to do it and enjoy the buzz of getting moving and getting those endorphins going, just knowing that you are doing something good to save a life.”