“The first time he drank a whole bottle, I went running into the halls to tell everyone, I was so excited,” says Malcolm Cutajar. “I felt like I had just won the lottery.”
Malcolm and his wife Marilyn are sitting outside of Mater Dei, with their son Nick asleep in the pram nearby. They have just come out of a 6-hour blood transfusion session for Nick, and at just 18-months old, he is clearly feeling super sleepy.
He shakes his head at us a little bit, and before we know it, he’s fast asleep.
Nick has not had it easy. He was born with a rare congenital heart defect called Tetralogy of Fallot. One of the symptoms of this condition is tiring easily when drinking from a bottle, a problem Nick had.
Since he wasn’t able to drink from a bottle, they had to feed him through a pipe to his stomach. “He would get breathless just drinking from the bottle,” his parents say to Lovin Malta.
At the age of three months and a half he underwent his first heart operation.
“Two days after he was born they told us to prepare his passport,” says Marilyn, his mother. “The first problem we found out about was his heart problems – we didn’t yet know about his other problems. They told us to prepare his passport so we’d be prepared for when we need to travel. And this was already a shock, he was just born and we already needed to do his passport… “
“They took a photo of him in hospital for the passport, at that time he was still at the Neonatal Paediatric Intensive Care Unit (NPICU). Three months passed until we first had to travel – and those first three months were spent at the hospital, we didn’t go home. Nick first got to go home when he was three-months-old,” she says.
Nick was also missing his thymus gland, a gland important for the immune system and without which Nick’s body couldn’t effectively fight of illnesses.
“Every three weeks we need to undergo an IVIG to help his immune system, since he was born without the thymus gland. Even now after the transplant, his immune system is still very weak. We come every three weeks, and the process takes about four hours or so. We come at around 10 or 11 am, and leave at about 4 or 5pm,” says Marilyn.
Before sitting down to speak to Lovin Malta, Malcolm and Marilyn excuse themselves to quickly mix up some medicine that Nick needs – even though he had just left a 6-hour transfusion.
Their dedication to his comfort and needs is inspiring, and they laugh as they talk about the happier moments with him.
“Whenever he sees a bird, he loves to let out a ‘quack’, just like a duck,” smiles Marilyn. “And Nick just loves listening to lullaby music, and hearing animal sounds, and you need to see him when he starts stacking things,” she says, possibly indicating a future in architecture for Nick.
With regular visits to Maltese hospitals as well as hospitals in England that are more specialised in Nick’s condition, the parents wanted to thank the nurses and doctors of the Disneyland Paediatric Ward as well as the NPICU wards – “everything we know about Nick’s condition is because of what they taught us,” and they now look to 2018 with hope that Nick’s operations begin to take effect.
“What we are mostly thinking about, and hoping for, is that the result of the transplant kicks in,” says Malcolm. “In the case of thymus, the immune system is complex, and you never know what could happen… ” he trails off.
“You just never know when something like this could happen to you. After having two children this was our third, and we just can never imagine what you might have to go through, or know what you are going to find abroad, let alone all the help you are going to find in Malta, like from the Community Chest Fund,” says Malcolm.
“Thank God for them,” he continues, “a group like them to find support from, apart from the help the Government gives you to travel abroad – but whenever you need help, the Community Chest Fund is always there.”