As Global Congenital Heart Disease Awareness Month takes place this February, the Donegal News spoke with Christine Callaghan from Dungloe, whose daughter Aran was diagnosed with congenital heart disease prenatally.
Christine and her husband Michéal Ó Bhaoighill discovered they were expecting identical twins during their first ultrasound.
The twins shared a placenta, which was unevenly split, leaving Aran with a smaller share than her sister Cobh. This left her umbilical cord lacking a vital blood vessel.
As a result, Christine’s pregnancy was closely monitored. Everything seemed to be progressing normally until the 16th week, when “things went downhill.”
“Cobh was making bigger leaps in the womb than Aran, so I was out in Letterkenny every two weeks, getting scans and keeping an eye on them,” Christine explained.
At the 20-week anomaly scan, concerns were raised regarding the development of Aran’s heart.
Christine was told the images would be passed to the National Maternity Hospital in Dublin, but not to worry.
“I wasn’t back in Gaoth Dobhair yet, and the phone was ringing from Holles Street (the National Maternity Hospital) asking me to come the following day,” Christine recalled.
“They confirmed our suspicions that something wasn’t quite right.”
Christine then spent the remainder of her pregnancy shuttling between the National Maternity Hospital and Letterkenny University Hospital.
During this time, Aran wasn’t growing, while Cobh was gaining weight. The gap between them continued to widen.
“They then touched on twin transfusion syndrome, where they were really stealing from each other.”
This led to several blue light trips to Dublin before the twins were delivered by emergency c-section at 33 weeks.
Between them, the girls weighed a total of 7lbs—Aran was just 3lbs, and Cobh was 4lbs.
After their birth, both girls were placed in the special neonatal care unit. Christine vividly recalls the moment Aran was moved to intensive care.
“We went for a coffee, and when we came back 15 minutes later, Aran was moved from her incubator with a little vest to an incubator with about a million different tubes hanging out of her—oxygen masks, heart-rate monitors—the works.
“She was essentially treated like a mushroom for the first three months of her life.”
Christine and Michéal nervously watched as Aran’s weight fluctuated, gram by gram, waiting for her to reach 5lbs—the minimum weight deemed safe for heart surgery.
However, despite being so small, the hospital made the difficult decision to stop feeding Aran due to the risk of necrotising enterocolitis (NEC), a condition that causes inflammation in the bowel and is common in premature babies.
Instead, she was fed through a tube in her leg.
Meanwhile, Cobh was discharged after two weeks and returned home, while Aran remained in intensive care in Crumlin.
Every weekend, Christine would travel home to Cobh and her other young daughter, Aileach.
She lugged litres of frozen breast milk she had been pumping while in Dublin.
described this period as “a crazy time,” one that wouldn’t have been possible without their hugely supportive family.
Aran spent her first year undergoing numerous procedures, including open-heart surgery on her tiny heart, which was no bigger than a small strawberry.
The surgery was so intense that Aran was left with no heartbeat of her own. She is now fully reliant on a pacemaker, which is located in her stomach and beats her heart for her.
She was officially discharged from Crumlin Hospital on her first birthday.
Today, at four years old, Aran is thriving and is very aware that her pacemaker is keeping her alive. She refers to it as “the batteries in her bolg.”
“Four years later, this is the first time we’ve been able to take a breath,” Christine said.
The once-weekly trips to Dublin are now bi-monthly, as Aran continues to grow stronger.
However, there are many challenges that come with having a pacemaker.
“We don’t do soft play, we can’t have a trampoline, and we can’t have magnets in our house because they might short-circuit the batteries in her pacemaker if they’re too close.”
Despite Christine’s desire to protect her daughter and “wrap her in cotton wool”, Aran is the biggest risk-taker in their house.
“The rest will be sitting inside drawing, and you look out the window, and Aran is hanging from a swing upside down,” Christine laughed.
Aran has taken her trauma in stride and is incredibly resilient. Her twin sister, Cobh, is not as carefree. She is highly empathetic, which makes her anxious and worried about her sister’s wellbeing.
“They are in playschool now, and Cobh is Aran’s bodyguard, even though Aran doesn’t need a bodyguard. Cobh just worries so much for her.”
Christine added, “Cobh is empathetic to a fault, and it has nearly impacted her own childhood.”
The family has received tremendous support throughout their journey, especially from the charity Heart Children, who have provided play therapy sessions for Cobh.
These sessions, facilitated by the local charity Gemma’s Legacy of Hope, have been extremely beneficial.
The community has also rallied around the family to ensure Aran’s safety due to her reliance on a pacemaker.
Her playschool teacher, Mary Ward, advocated for her to receive a designated AIM Support Worker, and the local ambulance station has a specially tailored plan in place for emergencies.
Although Aran will need further surgeries as she grows—such as replacing the batteries in her pacemaker and relocating it as she gets bigger—she is currently thriving and showing immense strength and resilience.
Christine sums it up perfectly: “She’s our feisty little fighter.”
Receive quality journalism wherever you are, on any device. Keep up to date from the comfort of your own home with a digital subscription.
Any time | Any place | Anywhere
SUBSCRIBE TO CURRENT EDITION TODAY
and get access to our archive editions dating back to 2007(CLICK ON THE TITLE BELOW TO SUBSCRIBE)