Baby Steps: Life after premature babies
Both of Melissa Magee's two young boys were born prematurely, and their resulting health difficulties mean they still require regular hospital visits.
Published 23/02/2014 | 02:30
Though she is only 25, Melissa Magee doesn't go out to nightclubs, pubs or cinemas. In fact, she has no social life at all. Instead, this young Dubliner spends all her time caring for her two little boys, who are both struggling with various health problems, including some that are life-threatening.
This month, she has at least 10 hospital visits pencilled on to the wall calendar – and this is a "quiet" month.
Yet, she has virtually no support and gets little respite from the never-ending pressure that caring for the boys entails.
Paul, Melissa's first baby, was born in Drogheda just 27 weeks and two days into the pregnancy.
Even though she was only 16, Melissa had already moved away from home and was, effectively, on her own.
"I was in denial, so I didn't go to hospital immediately," she says. "When the paramedics arrived, I was screaming, 'I can't be in labour.' I was rushed to the delivery ward, where they gave me a steroid injection to boost the baby's lungs. He only weighed one kilogram [2.2lbs] and was almost black from jaundice."
When Melissa next saw him, he was in an incubator. "I let out a scream," she says. "He looked so sick and so small, and there were wires everywhere."
Melissa was advised to have Paul baptised, as he was so frail. She refused and asked for a priest's blessing instead. "I had to stay positive," she says.
Over the next few weeks, Paul stopped breathing many times. "What a fighter he was," Melissa remembers with pride, while recalling that dark time. "I was afraid to talk to him, and I was afraid to sing to him in case I'd lose him. And, though I tried to express milk, that dried up, too, and I felt a total failure," she says.
Paul's biggest problem was his poorly developed lungs. "Virtually all premature babies have respiratory distress syndrome and chronic lung disease," explains Melissa.
She was finally able to bring Paul home when he was three months old. "Though he slept a lot and was a great little feeder, he just wasn't thriving," Melissa recalls. He failed to meet most of his milestones.
Then he got meningitis and was rushed to Our Lady's Children's Hospital in Crumlin, where, following his recovery, mild cerebral palsy was diagnosed.
When he was three years old, Paul had his adenoids and tonsils removed, and he had grommets inserted.
Shortly after, he said his first words and began walking. Nonetheless, he continued to be hospitalised for a range of respiratory problems and was often on inhalers, antibiotics and steroids.
In 2011, Paul was also diagnosed with sleep apnea. This occurs when the airways become constricted or blocked; this causes a drop in oxygen levels, and disturbances in breathing patterns. This can lead to a number of problems.
"He suffers from cerebral palsy, neurological defects, chronic lung disease, asthma, alopecia [hair loss], low immunity, delayed growth, poor fine motor skills and sensory processing disorder," says Melissa. "Every day with Paul is a challenge. "Though he's eight years old, he's only three stone and wears clothes meant for a five-year-old.
"He doesn't walk properly, he can't ride a bike and he can't write by hand [poor motor skills].
"Even though he needs help with everything, he doesn't have special-needs assistance at school, though he does get some resource hours."
But don't let all that mislead you. Paul may be pint-sized, but, according to his adoring mum, he has the heart of a giant.
"He has a great attitude," Melissa adds. "He is so loving and caring. He cares about everyone. He gives to homeless people and, when he heard about a little boy who had disappeared, he said a special prayer for him. He's really gifted."
She recounts how Paul joined the school choir – and ended up singing with The Three Tenors. "It was such a proud moment for me," Melissa says. And she volunteers that her elder son enjoys soccer and gymnastics.
Paul's baby brother, Tadgh, was born in October 2012. In spite of careful monitoring, this little fellow also came early. Melissa was utterly shocked when she went into labour. "I was screaming the Coombe down," she recalls.
When she woke, following the C-section delivery of her 1.3kg (2.8lbs) baby, she was devastated. "I felt robbed of my pregnancy," she says. "I knew I would never know what it's like to have a normal baby; to know what it's like to have a baby on my chest. This was history repeating itself."
But, when Melissa first saw Tadgh, he squeezed her finger and she melted. "It was the best feeling ever," she adds.
Though he was also very premature, he was a little more robust than his big brother had been at birth. "They'd given me two steroid injections to boost his lungs, just in case," says Melissa. "And that, combined with the extra few days gestation, meant he was healthier. His jaundice was less severe, while his lungs were not as weak as Paul's."
Nonetheless, Tadgh was still in great danger, but, under the expert care of the staff at the Coombe, he steadily grew stronger. But, this time, Melissa did have some support.
About two years before Tadgh's birth, Melissa had connected with Irish Premature Babies – a voluntary organisation supporting parents like her.
"From day one of my second pregnancy, they were there for me," she says. "I could pop in for a chat and a cup of tea. When I was having trouble expressing milk, they talked me through it. They also helped me buy some essential things for the baby."
Though his journey has been less frazzled, Tadgh is fed through a gastric tube; he has eye and dental problems, he recently had a tumour removed from his head and he, too, has sleep apnea.
Nonetheless, he scampers all over the carpet, even though his gastric tube is taped to his rosy cheek.
Melissa gathers him up in her arms and nuzzles his tummy lovingly. Tadgh giggles and then wiggles off her knee to get at the pile of educational toys around the room. He's as bright as a daisy.
When Melissa puts her boys to bed at night, they both wear masks, which deliver continuous positive airway pressure (CPAP). They will need to wear these masks for the rest of their lives.
In the meantime, Melissa must soldier on alone – day and night.
"I know I'm entitled to help, but I don't get it," Melissa says. "How can you sleep at night with two kids on breathing machines? I'm afraid to go to sleep at night, and then I'm that tired I can't wake up.
"I don't need anyone to cook and clean for me. I just want someone to help me have a nap, to give me a cup of tea or come with me for the odd hospital visit."
Who could deny this wonderful, caring, focused, but so very young mother a helping hand?
Irish Premature Babies, Carmichael House, North Brunswick St, D7. For more information, tel: (086) 162-8030 or see www.irishprematurebabies.com
Sunday Indo Life Magazine