Having a premature baby is often just the start of a struggle for families that can go on for years, writes MICHELLE McDONAGH
WHEN TINY Ruairí Craig was born in Mayo General Hospital on October 8th, 2008, at week 25 of pregnancy weighing only 1lb 13oz, his parents were told he would not make it through the night. It was the beginning of a harrowing emotional rollercoaster for the Craig family.
Born so early in the pregnancy, Ruairí’s prognosis at birth was not good. His mother, Sarah, recalls: “The nurses dressed Ruairí in a tiny blue babygro and a woollen blue hat. My baby boy appeared so perfect, but seemed so lifeless.
“Ruairí’s dad and I, along with his grandparents and auntie, were left alone with him for what we thought would be the last few minutes of his life. After some time, Ruairí began to take more frequent gasps, and from that point onward everything changed.”
The baby was taken into the special care unit where he was observed overnight and, like most parents of premature babies, they could look ahead only one hour at a time. The following day, the neonatal transport team from the Rotunda hospital arrived to transfer the brave little fighter to Dublin.
Everything seemed to be going well until a couple of days later when Sarah got an urgent call advising her to get to the hospital straight away as the baby was very ill with a serious infection which he had contracted in utero and which had led to his premature birth.
Sarah recalls the next two weeks as being “almost unbearable”. Ruairí was put on high ventilation as he had stopped breathing yet again. He was in a critical condition.
However, he rallied once again and, in March 2009, after many more ups and downs, Sarah was finally able to take her baby boy home to Mayo.
For the following year, Ruairí was in and out of hospital every couple of weeks with chest infections until he had a peg tube inserted to treat silent aspiration.
Last June, he was diagnosed with cerebral palsy. Ruairí, who will be four in October, is still not walking, although his doctors have said he will do so, possibly with a walking aid. He cannot speak yet, but is using Lámh sign language and will be starting at a special needs school next year.
“It’s been a tough few years with a lot of ups and downs, but I feel he’s coming around a corner. Ruairí is a great little character, he’s always doing things to make people laugh and he’s a very sociable little fella. He is getting on well at play school and loves meeting new people,” says Sarah.
Experiences similar to that of the Craig family are played out every single day in neonatal intensive care units (NICUs) and special care baby units (SCBUs) around the State.
Every year in Ireland, 4,500 babies are born prematurely, which is defined as before 37 weeks. Of those, some are too sick to survive, others will have long-term complications and many will progress well with the support and help of many of the intervention therapies that are available.
Irene Gunning, of the Irish Premature Babies charity, says that so many families need help in some way following a premature birth, whether it is emotional support, financial assistance or accommodation as there is a high rate of transfer for premature babies to larger urban centres of excellence, often for lengthy periods of time.
“There are so many issues facing families after a premature birth, it’s an emotional rollercoaster. You are up one minute and down the next, you are getting different reports about the baby’s condition every few hours and it can be touch and go for a long time.
“The babies are often so sick that their parents can’t hold them for a couple of weeks or more. Sometimes with twins, one baby could be left in the local hospital and the sicker baby may be sent off in an ambulance to Dublin. The torment for parents is horrendous.”
The lack of accommodation facilities in the major maternity hospitals for parents of very sick babies mean that families often have to fork out for hotels or BBs over long periods or travel back and forth long distances for weeks or months.
“In the UK, they have services to beat the band. There is accommodation provided for parents of sick babies beside the maternity hospitals and sometimes even in the units themselves,” says Gunning.
“We have families travelling up and down between Dublin and Donegal who can’t afford to stay over and we have had to pay for emergency accommodation in some cases. Our long-term aim is to get accommodation where the whole family can stay together.”
Although it’s a relief for parents when the premature baby is out of hospital and no longer physically unwell, it’s still far from plain sailing, she says.
Many “premmies” suffer ongoing lung problems, feeding complications and developmental delays, and may be sent home with specialised monitors or equipment.
Many babies will need extensive follow-up hospital appointments in the months and sometimes years following their discharge and will need to be referred for different therapies.
“The staff in our NICUs and SCBUs do such amazing work in very difficult circumstances. I’m a nurse myself and I don’t know how they do it. Many of the units have problems with vital life-saving equipment, including incubators and ventilators which are hopelessly outdated and even absent in some cases,” says Gunning.
“There is such a range of needs between units, it’s unbelievable. At one end, there are units with fancy kangaroo chairs for skin-to-skin contact between parent and baby, while at the other end, there are units with no chairs at all for parents to sit on. One unit didn’t even have a baby bath.”
The Irish Premature Babies charity is holding its annual motorbike road challenge, Ride Out for Prems, from Thursday to Sunday . The convoy of bikers will travel to nine neonatal units around the State in an effort to raise awareness and funds to purchase equipment for the units. To support this campaign, text Prem to 57802 and make a donation. Texts cost €2 with a minimum of €1.65 going to Irish Premature Babies. Standard network charges may apply.
HELP AT HAND: PREMATURE BABIES CHARITY
Irish Premature Babies was set up by Alison Fegan Molloy following the birth of her second premature baby in 2009 to fill the gap in information and support for parents.
Since then, the voluntary organisation has grown rapidly and it now operates a helpline (086-3458931) and a buddy system of one-to-one support for families.
The charity runs regular meet-and- greet sessions for families throughout the State to enable parents the opportunity to socialise with other families of premature children. It provides information leaflets for parents, runs a “Tots and Treats” hamper campaign for neonatal units at Christmas and has launched an accommodation-funding project called Keep Parents and Babies Together.
Irish Premature Babies also raises funds to purchase equipment for NICUs and SCBUs nationwide.
