For most parents, learning that their children are born with congenital heart disease marks the start of a traumatic journey. Ramona Depares meets two women whose children lead fulfilling lives and learns about Beating Hearts Malta, the organisation that helps make it possible.
Two days after Francene Cauchi gave birth to twin sons Samuel and Benjamin, she was not even given time to hug the tiny new-borns. Instead, they were flown straight to London for heart surgery.
Francene herself followed them some days later, despite being advised that she needed to allow her body more time for recovery before travelling. Her other son, Thomas, at the time three years old, stayed behind in Malta to be taken care of by Francene’s parents.
“It was a terrible time. We were aware that the twins would be born with a heart condition and had been warned that immediate surgery away from Malta may be needed. But nothing prepares you for the reality of giving birth, having your babies taken away from you and having to plan an indefinite time away from home and family,” Francine says.
However, the process would have been infinitely more difficult without the assistance of Beating Hearts Malta, a foundation that offers support to children and parents of children with congenital heart problems, as well as adults.
The foundation was started by Katrina Aquilina seven years ago when, she too, discovered that her son was born with congenital heart problems. He was later diagnosed with a condition called Tricuspid Atresia.
“At the time, there was not a lot of knowledge among parents whose children had congenital heart problems. To a certain extent, despite the fact that Malta does boast an amazing medical team, when it came to non-medical areas like emotional issues and practical requirements, my husband and I had to figure it out ourselves,” Katrina says.
Like Francene, Katrina too found herself on the way to London three days after giving birth. Reality, she tells me, is that most babies born with heart problems will require surgery abroad.
She describes how, even figuring out the most basic thing like accommodation while her son was receiving treatment was an issue at first.
“It took us a while to realise that the Great Ormond Hospital, which is where such interventions usually take place, offers accommodation to parents while the children are in surgery.
"There are also the nuns, who offer accommodation at rates that are significantly less expensive than commercial ones. But we had no idea, so, at first, we actually stayed in a hotel for some time. You can imagine the strain on our resources, staying at a hotel in central London for an indefinite time…”
In 2011, Beating Hearts Malta was born
The traumatic experience propelled Katrina to do something about it and, in 2011, Beating Hearts Malta was born.
The foundation not only offers direct support and advice to parents of children born with heart problems and to adult patients, but also works to raise funds that are then used to help improve health care facilities and equipment available in Malta.
The group’s first fund-raising drive helped fund the purchase of a new echocardiography probe at Mater Dei Hospital to perform ultrasound examinations of the heart in unborn babies suspected to be suffering from a congenital heart condition.
Last year, BHM also contributed €50,000 towards the purchase of a new echocardiography machine for the Cardiology Department and another €35,000 to part fund a Cardiopulmonary Exercise Testing Equipment (CPET).
More recently, more funds were collected through a series of exhibitions featuring works that were generously donated by Prof. Victor Grech.
“Parents and patients who find themselves in this situation do receive a lot of support. The idea behind the foundation was to start giving something back to society by helping improve the levels of cardiac health care – which are already very high – in Malta. The medical teams do such a great job that they deserve all the help they can get,” Ms Aquilina says.
With this in mind, the organisation is also helping fund additional educational opportunities for Malta’s heart doctors, such as bursaries and training courses.
When parents first learn that their child is suffering from a heart condition, the initial reaction tends to be of hopelessness
However, another function of the organisation is equally vital, albeit perhaps more subtle – the organisation places priority on offering hope to parents of afflicted children.
“When parents first learn that their child is suffering from a heart condition, the initial reaction tends to be of hopelessness. BHM is there to help them realise that this is not a ‘do or die’ situation, and that advances in medicine nowadays mean that our children can also enjoy a happy, long life.”
Her own son is one such beautiful example, she adds.
“Nowadays there is a lot that can be done, and that is our message to the parents. This is another reason why our fund-raising efforts are so important, so that children can be given access to the top medical treatments available.”
Another beacon of hope shines brightly through Francene’s twins, who also lead fulfilling lives, even as one of them awaits further surgery.
Francene’s story is very particular, in that she had to cope with the news and the aftermath of not one new-born, but two, both suffering from heart problems.
“This was my second pregnancy and it was one of the first cases where we were aware before the birth. I underwent a planned C-section. As soon as I regained consciousness after surgery and asked the doctor whether all had gone well, the reply was: ‘yes, they’re on their way to London’.”
Not the most auspicious start to life, for the two little ones. Then, amidst all the worry and the trying to figure out how best to get on with things, Francene learnt about BHM.
“From that point onwards, things did get easier. It helps, knowing that you are being guided by people who have already been through the same process, who had to deal with the same emotions you are,” she says.
Francene arrived in London on the morning the twins were going in for surgery.
“Complications ensued immediately. Samuel was responding well, but we found out that Benjamin would need further surgery, which he will be undergoing next year,” she explains.
Today, the twins are three years old. Both are full of joie de vivre. They enjoy going to the pool with their older brother and being typically rambunctious children. Watching them play fills their mother’s heart with hope.
'This is not a death sentence'
“Our biggest fears, when we learnt of their condition, was that they wouldn’t lead a fulfilling life. Our thoughts were focused on what would happen in a few years’ time? Would they still be with us? Would they be happy? Now, thanks to the help we have received, we have come to realise that this is not a death sentence,” she says with a smile.
She remains fascinated by how quickly children bounce back, even after surgery, and hopes that parents going through the same ordeal finds this a comfort.
“Two days after surgery they were already sitting upright. Four days later, they were out of hospital. They give me courage.”
And, they are also very aware of their condition and what it entails, acknowledging every scar and asking about what’s next.
“We try to explain as best as we can and, thankfully, going to the doctor’s is no longer a big deal, now. At first, even just a medical visit was a trauma, because they could remember the pain that medical stuff brought with it.”
To help them process everything that happens to them, Francene and her husband use online videos to explain everything that happens in the body.
But there are dark times, too, of course. Francene remembers with sadness the feeling of having to leave for London indefinitely, with barely enough time to explain to her six-year-old, Thomas, what was going on.
“From his point of view, his parents suddenly abandoned him. No amount of explanations can comfort a little boy whose parents suddenly disappeared.”
The child ended up staying with his grandparents for two months, until things in London had stabilised enough to allow him to join the rest of the family, there.
But even then, the sudden separation had so traumatised him that he would only communicate with his parents using signs.
“He was very brave, though. He adores his brothers and really watches out for them, especially if they’re ‘rough-housing’ a bit, as boys tend to do. He will turn to me and ask, with a serious look on his face, whether Benjamin should take a rest,” she says.
Benjamin is already aware that in the future he will have to return to London with his parents. The family is trying to get him used to the idea and, for now, the strategy seems to be working.
“We can’t tell how he will react once he is there, though. Picture such a young child, to go through all the excitement of the flight, and the travelling, only to wind up straight in hospital with the prospect of a long convalescence.”
Francene describes how, when Benjamin last underwent major surgery, he was so scared when he regained consciousness only to find himself surrounded by strangers, his body full of tubes, that he couldn’t even cry.
“As soon as I entered the ward and he saw me, he completely broke down. In fact, they made me leave in order to calm him down. That is the worst part of all, watching your little son cry knowing that you cannot do anything to make him feel better.”
And, no matter how many times you explain to a child what is likely to happen, it is impossible to predict exactly what their reactions will be, when it’s actually happening.
“Recently, he needed to be administered anaesthetic. Again, we tried to prepare him but when he woke up he freaked out and started screaming.
“The thing is, although they understand what is happening, children don’t necessarily understand why it is necessary. From their point of view, one moment they are happily playing and the next they’re taken to have painful things done to them. It’s hardly surprising that, at some point, they will wonder whether Mummy loves them,” she says, a tinge of sadness in her voice.
And yet, the overall message that these two women share is one of hope, both through their personal stories and through the work being done by BHM.
Katrina sums it up succinctly:
“As a foundation, we just want to help parents and their little ones feel that it will be okay. And to help them gain access to the best medical care there is, in order to make sure that this is true,” she concludes.
Beating Hearts Malta are holding a fund-raising concert on Sunday (tomorrow) featuring Gianluca Bezzina and The Tailors at 7pm at St Patrick Salesian Home in Sliema. Tickets may be booked by calling on 99855556.
Anyone interested in donating to Beating Hearts Malta or getting in touch can do so through the Facebook Page or by visiting their website.