Early arrival just the beginning for the 'preemies'

As well as the emotional strain, parents of premature babies can also face long commutes and financial burdens, writes SHEILA WAYMAN

THE HARDEST PART for Mags Butler, after her twin boys were delivered at 28 weeks, was walking out the door of the neonatal intensive-care unit every day knowing if anything happened, she would be hours away.

She and her husband, Michael, took turns to make the daily trip from their home in Thurles, Co Tipperary, to Dublin, as Adam and Alex fought for their lives at the National Maternity Hospital on Holles Street.

She particularly remembers day 16, when the smallest twin, Adam, was suffering frequent infections. “I had just got home after all day on the bus and I got a phone call to say they had done a lumbar puncture and he had meningitis. We got a lift straight back up.

“Thankfully, it turned out okay and there were no side effects, but it was a scare at the time. You are so far away from them that when something like that happens, it makes it harder.”

The plight of parents such as the Butlers has prompted the support group, Irish Premature Babies, to launch a project called Keep Parents and Babies Together. The charity has embarked on a fundraising drive to provide accommodation for parents whose babies are transferred from all over Ireland to neonatal units in Dublin.

For Mags, who was struggling to express breast milk to be taken to her tiny sons every day, it would have made a huge difference if she and Michael had a place to stay in the city.

“I can’t understand why they don’t provide accommodation for parents of premature babies. It’s ridiculous when they are so sick and they are so small,” she says.

Early on in Mags’s pregnancy there was concern about a marked difference in growth between the identical twins, and they needed to be monitored closely.

She was in the Rotunda for four weeks before her waters broke and, when it was decided to deliver the twins by Caesarean section on April 25th last, she had to be transferred to Holles Street because there was no space at the Rotunda’s neonatal ICU. Alex was 1.59kg at birth but Adam was only 0.85kg.

The first week was brilliant, says Mags, because she was kept in for six days after the section and could go up and down to see the boys and express milk for them. “When I came home, it was a nightmare.”

For the first week, she and Michael took turns to go up and down on the train to Dublin every day, the other staying behind to mind their three older children, Gillon (10), Caoimhe (8) and Megan (3). In ways, Mags says, it was a good thing that Michael, a scaffolder, was out of work for those months before and after the twins’ arrival.

Then they were told they were entitled to use hospital transport provided by the HSE, a daily bus from Cashel serving every hospital in Dublin.

“We could leave here at 8am and not get to Holles Street until 11 or 12,” Mags says. “You could be lucky on a day and it would be just yourself, or another day it might be going to four or five different hospitals.”

She could spend two precious hours with the boys before she would get a call to say the bus was leaving for the 170km journey home. With Adam gravely ill and Alex’s brain scans suggesting there might be an infection or bleed on the brain, it was a worrying time.

“You were constantly watching out for the phone ringing. If the phone did ring you were jumping. “I got a phone call one day, it was one of the nurses ringing to say they were going to give Alex a blood transfusion and they needed my consent. But just for the split second when you saw the number coming up, you thought, Oh my God . . . will I answer it?”

It was eight weeks before the twins could be transferred to South Tipperary General Hospital and Mags says, “To be honest, looking back now, I don’t how we did it.”

With their three other children arriving full-term, it was “a big shock” for the Butlers to be plunged into the world of “preemies”.

“You don’t realise the problems that go with premature babies until you go through it yourself. You just assume that if they’re born premature, they take a while to grow and that’s it – but there is so much more to it.”

More than 4,500 families in Ireland every year face the fear and significant medical issues that a premature birth brings. According to the latest available national perinatal figures, there were 76,021 births in Ireland in 2009, of which 6 per cent were pre-term, i.e. less than 37 weeks gestation.

These babies face days, weeks, if not months in hospitals, during which their parents wait in trepidation as they cling to life, often enduring a series of infections.

In addition to the emotional strain, there may be the financial burden of lost time at work, as well as the cost of travelling and parking, childcare for remaining siblings, and accommodation if a baby is transferred to a hospital far from home.

A study from the Stanford University School of Medicine in the US showed more than half the parents whose babies were in the neonatal ICU for an extended period of time either had post-traumatic-stress disorder or were at high risk of developing it.

Irish Premature Babies was set up in 2009 to offer information and support to parents, through initiatives such as its buddy system of one-to-one contact with people who have been through the experience. On discharge from hospital, these babies often continue to need specialised care at home and frequent medical appointments.

On Thursday, as part of a number of events in Ireland to mark World Prematurity Day, the charity is launching its first book, Tiny Footprints, which is a collection of 80 stories from parents of pre-term babies.

Liz Lewis, whose 19-month-old daughter, Ava, weighed less than a kilo when she was born 11 weeks early, is one of the editing team. When you have a premature baby, the only thing that makes you feel better is contact with other parents who have been there, she says.

They envisage that this book will offer hope to parents as they sit beside incubators: “That’s all you do – it’s a waiting game,” she says. “These little miracles have such resilience: even the ones who don’t make it, put up such a fight.”

Some of the stories are very sad, she says, but none is totally negative. “There are babies who have passed, but they are stories of hope.”

Liz and her husband, Scott, who live in Swords, Co Dublin, know how lucky they are that Ava is thriving now after her premature arrival and a “touch and go” first few weeks.

In week 29 of her pregnancy, Liz was concerned her “little wriggler” was not moving as much. Feeling that maybe she was just being a nervous first-time mum-to-be, she nevertheless went into Holles Street to be checked.

She arrived at at 7.30am and by 11.30am their daughter was delivered by Caesarean section. The couple were told if they had waited another eight hours, it would have been a stillbirth.

Meanwhile, the Butler twins, now aged seven months, are doing okay, their mother says. Adam recently had a hernia operation in Temple Street children’s hospital – there was no problem about Mags staying over with him during that – and is “flying” afterwards.

“Alex has a few problems but he is getting there,” Mags says. “They are thinking he is showing early signs of cerebral palsy and he is on sedation to calm him because he is very irritable, but he is not as bad as he was. He is definitely improving a little bit, but it is slow progress.”

For more information, see irishprematurebabies.com

SURGERY HOPE: ‘IT WILL CHANGE HER WHOLE QUALITY OF LIFE’

The parents of Niamh Moriarty, who was born at 28 weeks weighing 1.36kg, say they were never warned when she was discharged from hospital that she might have future developmental problems due to her prematurity.

But at around 11 months they noticed she was making no effort to sit up or crawl or do anything with her lower body.

“If we hadn’t already had two children, we would not have realised something was wrong until way later,” says her father, Tom.

Tom and his wife Deirdre raised their concerns and, after an MRI brain scan was done at 14 months, they were told bluntly their daughter had cerebral palsy. “When we heard that, of course, we knew nothing about it and you just think, Oh my God, my child is disabled.”

Niamh has spastic diplegia, a form of cerebral palsy that affects her lower limbs. She is “perfect from the hips up”, says Tom, and is of above-average intelligence.

“From the legs down, she is getting bad messages from the brain.” This causes a tightening, or spasticity, in the muscles in her legs.

The Moriartys believe that if she had had a MRI scan after birth, the problem would have been identified immediately, they could have started working on her much earlier “and she would be much better placed now”.

Having known nothing about premature babies before Niamh was born, they now feel strongly that services for premature babies in the country are “absolutely disastrous”.

After the diagnosis, “we were left a lot to our own devices”, says Tom. They had to wait about four months for a first appointment with the service provider, Enable Ireland, to hear about the condition and what they should be doing for her.

One of them needed to be at home to give Niamh extra care and so Tom, an accountant, left his job.

Niamh, who is now aged five, has progressed well with the help of a physiotherapist and an occupational therapist – although her sessions were reduced as cutbacks hit the services over the past couple of years. At home, she needs at least an hour and a half of physio every day.

She has a wheelchair and can walk a little with the aid of tripod sticks but her knees come together and her heels are unable to reach the ground.

“Her muscles get very sore and stiff quite quickly. That is the problem,” says Tom.

When the Moriartys heard about an operation, called a Selective Dorsal Rhitzotomy (SDR), that is being performed in the US on children with cerebral palsy, they were determined to find out more. It was mentioned to them by an American professional who, according to Tom, was stunned at how “conservative and backwards” Irish treatment of children with cerebral palsy is compared to the US.

Here, Tom says, Niamh faces having orthopaedic surgery on her heel cords and leg muscles every three to four years. Whereas having an SDR should enable her to walk independently and reduce the need for surgery in the future.

The SDR was pioneered by Dr TS Park at St Louis Children’s Hospital, Missouri, 15 years ago and he recently performed it on his 2,000th patient.

The Moriartys thoroughly researched the operation, contacting other parents, including three or four families living here, whose children have had it. Niamh has now been approved to have the procedure done at St Louis Children’s Hospital on February 21st.

The operating team will use microsurgery to identify which nerves are sending the bad signals to the muscles in the legs that are tight and will cut those nerve endings.

After the operation, which is expected to last up to five hours, Niamh will have to learn to walk again, “but this time she will be learning to walk without the stricture of bad signals going to her muscles”, says Tom.

Six months of intensive physiotherapy will take her back to the stage where she is now, but after that she will be able to improve her mobility. “It was a very hard decision to make,” he says. “But having studied all the facts – and they are facts not theories ” – they are convinced it is the best thing for their daughter.

Gratified by “fantastic” community support, they are working night and day to raise the €60,000 needed for the operation and five-week stay in the hospital.

“She will never walk perfectly but she will be able to walk independently,” says Tom, who will travel with Niamh to the US. “It will effectively change her whole quality of life – if she didn’t have this operation she would, more than likely, at the age of 13 or 14 end up in a wheelchair for life.”

For more information see niamhswish.com

SURVEY FIRST: CARE FOR PREMATURE BABIES

The first survey on the service and care provided to premature babies in Ireland, which will be published on Thursday, is expected to expose gaps in the standards of our neonatal services.

The report has been prepared by the Royal College of Physicians of Ireland’s Neonatal Sub-Committee and will make a series of recommendations to encourage greater awareness, standards of care, and support for parents of premature babies.

Ireland was not involved in Too Little, Too Late? Why Europe Should Do More for Preterm Infants, a pan-European benchmarking report into neonatal care, services and policy, which was published last year and covered 13 countries.

This week’s report is being launched by Irish Premature Babies in partnership with the European Foundation for the Care of Newborn Infants (EFCNI) and supported by Abbott.