Friday 23 March 2018

Early arrivals: What it’s like to have a premature baby

Some 4,500 babies are born before 37 weeks in Ireland each year, and it can be a challenging time for both mums and babies. Arlene Harris hears one mother's story

Allison Fegan Molloy and her sons, Oisin and Cillian

Anyone who has ever had a baby will understand the powerful combination of love tinged with fear at the first sight of their newborn. Apart from obviously loving every single hair on their tiny infant's head, most parents will also be wondering how they will care for somebody so small and fragile.

But spare a thought for parents of premature babies who are often faced with little beings no bigger than their hand bravely clinging on to life with all their might.

One in 10 new babies are born preterm and many begin their lives in the neonatal ward as medical teams work around the clock to ensure they become strong and well enough to finally go home with their families.

Allison Fegan Molloy is the voluntary chairperson of the Irish Premature Babies charity, which she set up. She has two sons Cillian (9) and Oisin (6), both who were born prematurely, and says the feeling of helplessness when she clapped eyes on each tiny son was overwhelming.

"Cillian was born at 30 weeks and was taken straight to NICU where he spent the first six weeks of his life," she says. "I first saw him in a photo sent up to me in recovery and thought he looked quite big. But I was allowed down a few hours later and burst out crying when I saw how tiny he actually was. He had a hollow for a stomach, was hairy, very wrinkly and bright red with a nappy which went up to his neck and two chicken legs hanging out the bottom.

"Shock was the most overwhelming emotion and I remember the doctor talking about bleeds on his brain but his words just washed over me. He had to tell me about six times before the reality of my situation started to sink in."

A day before delivery, Allison, who is married to Ken, was only concerned about choosing the name of her child when suddenly she was thrust into a nightmarish situation watching her tiny baby endure so many complications.

"When Cillian reached full-term, he had surgery for an inguinal hernia, then he got bacterial meningitis and we nearly lost him," she says. "It was so hard to watch our beautiful little baby fight this deadly infection. All his veins collapsed and he had to have deep vein cannulas in his neck and all his hair was shaved off.

"But our tiny little guy eventually came home bald but unbeaten. He had to attend so many clinics to monitor his development - and he had a condition called delayed visual maturation which meant he couldn't see. It took eight months for him to actually look at us and smile and I thought my heart would break when our eyes first connected."

As the months rolled on, Cillian attended regular audio clinics as the meningitis had affected his hearing. He also had developmental appointments to monitor his milestones, and because of his prematurity, was very vulnerable to infection.

"Cillian spent the first two years of life in and out of hospital," recalls Allison. "He had every infection going, including many lung and chest infections, swine flu, pneumonia, RSV virus and bronchitis.

"Then when he was two, he started having seizures and was diagnosed with epilepsy - just around the same time I gave birth to my second preterm baby, Oisin."

Allison's second baby arrived at 31 weeks but previous experience meant she was more aware of what was happening.

"I had a placental abruption, Oisin was breech and when the abruption was happening, it caused a cord prolapse, which meant that once the cord was exposed to air, they had five minutes to get him out," she recalls.

"I had to be knocked out and I remember waking up to my consultant whispering in my ear that the baby was alive and in the NICU with daddy. I felt detached when I saw him first but was very focused on his medical issues and one of the nurses even asked, did I work in a medical field.

"But although the emotions were not there initially it didn't take long before the love for my new baby started to blossom."

In the years since their births, Cillian and Oisin have had complications - Cillian was diagnosed with a lifelong condition called sensory processing disorder. He also needed speech therapy and is currently being assessed for another long-term condition. His brother failed to thrive for a long while after he was born and was behind in both his weight and milestones. Both boys also had issues with their sight and have been diagnosed with asthma - but Allison wouldn't change a thing about them.

"The last nine years have been difficult," she says. "When you are a preterm mother, your journey is so different to the norm. Doctors and nurses fuss around your baby 24 hours a day while you have to go home alone. You often miss the first nappy change, first wash, first time out of an incubator and the first feed.

"Cillian's appointments are still on-going and it's been a learning curve for us as a family. But he is the most beautiful, intelligent and witty boy, and we both love him with every essence of our being.

"The same goes for Oisin, who was assessed by the early interaction team and found to have an extremely high IQ so it was wonderful to have brilliant news and a huge desire to brag.

"Having the boys has changed who I am, but I wouldn't change a hair on their heads."

Margaret Hanahoe is the assistant director of midwifery at the National maternity hospital. She says the earlier babies arrive, the more care they will need

Irish Independent

Life Newsletter

Our digest of the week's juiciest lifestyle titbits.

Editors Choice

Also in Life