Life in a neonatal ward is a challenging one, as premature babies fight for survival, writes SHEILA WAYMAN
THE FIRST days of parenthood are not supposed to be like this. The couple from Galway can only sit and stare at their tiny baby son, his eyes still fused shut, as a ventilator helps him breathe.
“Hi, I’m Jack”, is handwritten on a blue card posted at the end of his incubator; another card records that he was born on February 4th, at 24 weeks gestation, weighing 950g (2lb 1oz).
“We just want him to live now, that’s all that matters,” says his mother Sarah Cleary quietly. It has been a week since his unexpected arrival at the Rotunda Hospital in Dublin and every day she and her husband James feel a little more optimistic. Staff prepare you for the worst, they explain, but he has been stable since he was born.
Sarah had been admitted to University College Hospital in Galway with contractions, “but then things slowed down and we thought he would sit tight”, she says. Due to an outbreak of bronchiolitis in that hospital’s ICU, she was transferred by ambulance to the Rotunda Hospital as a precaution, because if the baby were to arrive he was going to need intensive care.
“I thought I was coming up to Dublin for a couple of days,” she says. When they reached the hospital she still did not think she was in labour but Jack was born 20 minutes later. James, who had driven up independently, unaware of the impending birth, arrived three minutes afterwards.
A relatively good birth weight for 24 weeks gestation is in Jack’s favour. So is the fact that Sarah made it to the Rotunda in time. Babies born at less than 26 weeks tend to have the most problems, but they are more likely to survive when they receive highly specialised medical and nursing care, as is provided in the neonatal intensive care unit.
“If he had been born on the N6 he wouldn’t have had any chance at all,” she says.
Naked except for a little white nappy, Jack’s reddy brown body is wired up to a monitor that constantly gives colour-coded figures for his heart rate, respiratory rate, oxygen saturation and blood pressure, in a display that can be read from across the other side of the intensive care unit.
It is 7.30am and in the neonatal unit on the hospital’s second floor, clinical nurse manager Liz Doran is handing over after her 12-hour night shift to Elizabeth Tobin, who will be the nurse in charge for the next 12 hours. There were no admissions overnight and one baby was moved out of intensive care at midnight.
In a hushed air of efficiency, the 13 incoming nurses are updated on the conditions of the 31 babies in the 39-bed unit, which consists of intensive care, high dependency and special care sections.
“It has been a grand night,” Doran tells The Irish Times as she prepares to head home. But you can never relax, she explains, as you never know what is going to happen. She was mindful that a woman expecting triplets was down in an antenatal ward for bed rest.
Premature babies are at their most vulnerable during delivery and the immediate resuscitation period afterwards, says consultant neonatalologist Naomi McCallion, who is in charge of the unit this week. She has just finished her morning ward round, in the company of registrars, nurses and medical students.
The unit’s team approach is very evident in discussion of the tiny patients. While “theoretically” McCallion has the final say, it would be rare, she says, to overrule what an experienced nurse is suggesting. In a hospital which has more than 8,500 births a year, it is one area where nurses get to know babies, who may be there for months. Their cot-side observations of the often very subtle signs that a baby is deteriorating are key in the ongoing care.
Staff say it is always difficult when a baby dies and they empathise with the parents’ heartbreak. But it is in a day’s work and they have to move on if they are going to do their best for the next critically ill baby to come through their doors.
Although premature babies look perfectly formed, with hair, eyelashes and fingernails, inside their vital organs are very immature. The first 72 hours are critical while staff stabilise and support their circulation and breathing; it is a time when bleeding in the brain can occur.
Unit nurse manager Orla O’Byrne has seen a dramatic improvement in the survival rates of premature babies during her 20 years at the Rotunda, due mainly to the benefits of administering surfactant – a substance to prevent the lungs collapsing that a foetus only starts to produce in quantity from about 32 weeks – as well as steroids. Technology used to sustain life is also developing all the time.
The challenge, she says, is to improve their expected quality of life. Out of the 65 per cent who will survive being born at 24 weeks, about 40 per cent will have some sort of disability. Once babies are stabilised, the next step is to address their intricate nutritional needs. “The babies who grow best seem to do well,” says McCallion, “so you are trying to get nutrition into them; the minerals, the vitamins that they would be having [in the womb], as that is crucial to getting off ventilators, getting stronger and their brain growth is probably related to it as well. Breast milk is our best attempt at what should be there.”
Mothers of premature babies are encouraged to express milk if possible. As well as providing easily digested calories, it has growth factors and antibodies against infections. Donor milk can be used but this has to be pasteurised, which takes some of the good out of it. There is no milk bank in the Republic, so the Rotunda gets supplies from one in Enniskillen.
Sarah is expressing every three hours for Jack and that “at least gives me something to focus on”. She has a photo of him to look at which helps stimulate milk production. “I try to visualise him being there.” Otherwise she feels a bit helpless. Not being able to pick him up is the hardest part, she says. Once premature babies are clinically stable, skin-to-skin contact is beneficial.
For these babies in intensive care who should still be in their mothers’ wombs, overstimulation has to be avoided. Handling of sick babies is kept to a minimum and baby blankets are draped over the tops of the incubators to lower the light level. A sound-ear on the wall measures the decibels in the room and its flashing red lights, when it gets too noisy, remind staff and visitors to keep their voices down.
The little bodies are “nested” within the incubators because the feeling of containment is comforting. As their development progresses, they will begin to move more. Crying is a welcome sound and one that is noticeably absent from the intensive care room. “When we hear them crying, we say, ‘It’s time for you to go’,” says O’Byrne as she gently guides a soother into the mouth of a protesting infant in a 13-bed room in the high dependency/special care area.
Still looking shell-shocked at being fast-forwarded into parenthood, Sarah and James also have to cope with being away from home and extended family. They have rented a short-term apartment across the road from the hospital. Sarah is now on maternity leave from her job as a pharmacist in the Galway Clinic and James, who works for a bank, says his manager is being very understanding and may be able to facilitate him working in a Dublin branch if necessary.
Parents of premature babies are advised to focus on the original due date as the time for discharge. For Jack that is May 23rd, but they hope he can be transferred to Galway hospital well before that.
Taking the baby home is what parents look forward to, but it can also be a fraught time as the care needs can be complex. The unit’s discharge planning co-ordinator, Marguerite Fitzgibbon, is there to make it as easy as possible.
“Fear is a huge issue with parents and I try to reassure them and build up their confidence,” she says. In preparation for going home, parents are encouraged to stay overnight with their babies in one of the unit’s rooms fitted with a pull-down bed. They are also taught how to resuscitate, just in case.
Within the hospital, there is a support group which meets weekly for parents who have babies in the neonatal unit. “Before” and “after” photographic displays of premature babies sent in by grateful families hang in one of the unit’s corridors. The journey from incubated infant to smiling toddler, illustrated in the pictures, offers hope and encouragement to the latest batch of parents.
Almost 1,200 babies are admitted to the neonatal unit each year, the majority being premature – defined as birth before 37 weeks – and including some transferred from regional hospitals where the necessary specialised care is not available. Other admissions include babies born with congenital abnormalities and those who become ill soon after birth.
Two cots in the unit, on average, are occupied by babies who are being weaned off their inherited drug addiction and will spend about 30 days there.
It is “heartbreaking”, says O’Byrne, to see these babies, who can become very distressed. The big worry is what sort of environment these babies will be going home to, and one of the unit’s two social workers is dedicated to dealing with drug-addicted mothers and their babies.
Within these walls, there is around-the-clock care, 365 days a year, and parents such as the Clearys have nothing but praise for all who work here to maintain life and nurture the fragile bodies. “The staff have just been incredible,” says Sarah. People have a lot to say about the health service, she points out, but for them it has not been found wanting.
They hope that soon they will be able to hold Jack themselves and start bonding with him. Knowing from a scan that Sarah was expecting a boy, they had a couple of names in mind but quickly settled on Jack after the birth, as they thought it sounded like a fighter.
“He looks so fragile,” she adds lovingly, “but he’s tougher than he looks.”
ALL BEN Murphy wanted for his 11th birthday last week was to see his baby sister. He had waited a long time for a sibling.
But for the time being he has to make do with photos because little Lillie, who arrived 53 minutes into the new year, at 28 weeks, has been in the Rotunda’s neonatal unit ever since.
While Ben’s parents, Sarah and Keith, are free to come and go, as are grandparents, no children are allowed to visit. They would bring an unacceptable risk of infection which could be detrimental to the babies’ health.
Sarah had been admitted to the Rotunda on December 29th with pre-eclampsia and within days her 690g (1.5lbs) baby had to be delivered by Caesarean section.
After a normal labour with full-term, “it was everything I didn’t want for this one”, she says. “I made sure I saw her before she was taken up here.” Her first reaction? “Oh my God she’s tiny!”
That was six weeks ago and Lillie has since doubled her birth weight. She spent her first two weeks in intensive care, was out of there for two weeks before a relapse sent her back.
Sarah hopes that Lillie is at least halfway through her stay in the neonatal unit, as it is another six weeks to her due date.
Now in a five-cot room, Lillie can be cuddled by her mother, who comes in every day from Blanchardstown in west Dublin, for up to seven hours. It is helpful, she says, to hear stories from other parents of babies in the unit, who are all at different stages. “We are planning to meet in a year and see how much they have grown.”
Meanwhile, she cannot wait for the day they can bring their daughter home and has no qualms about the prospect. “I trust the hospital. If they think she is ready, I am happy to get her home and get some normality into my life.”
There’ll be no greater welcome on that day for Lillie than the one from her big brother.
8,597
births annually in the Rotunda hospital *
1,186
babies admitted to the neonatal unit each year*
39
beds in the neonatal unit
70
staff nurses needed to provide around-the-clock care, 365 days a year
*Figures for 2008
65%
survival rate for babies born at 24 weeks**
80%
survival rate for babies born at 25 weeks**
**Rates for Rotunda 2003-2007
