A premature birth can be terrifying. The care of a pre-term baby is very different to that of a full-term baby, as one mother tells Áilín Quinlan
ENGLISH teacher Ashling Muldowney was enjoying a tranquil pregnancy — until things suddenly took a turn very much for the worse.
It was the end of January 2015, and the Cobh, Co Cork resident, by then comfortably into her 29th week, suddenly realised she was experiencing slight bleeding.
Although concerned, Ashling never imagined that within a matter of hours she would be giving birth, 11 weeks early to a tiny, three-pound baby son Jacob, one of the 4,500 babies born prematurely in Ireland each year.
For the moment, Ashling, who had been previously diagnosed as having rhesus negative blood, simply obeyed the hospital’s warning to contact its maternity unit to report any bleeding. Initially, however, tests seemed to show that all was well, recalls Ashling, a second-level teacher at Glanmire Community College and mother of two — her other son Noah is now three years old.
“I went to the hospital for a routine check-up. I received a scan and everything was okay,” she says.
One of the doctors suggested administering a steroid injection to help the baby’s lungs in the event of premature labour, even though, she recalls, “at that point they were happy that everything was fine and they were basically dotting the i’s and crossing the t’s.”
Administering the steroid actually involved two injections 12 hours apart. “I got the first injection at 1pm that day. A full developmental scan of the baby was taken and everything was okay,” says Ashling who was admitted to hospital.
Twelve hours later at 1am on the morning of January 30, she was given the second steroid injection.
At 3am, however, Ashling entered into spontaneous pre-term labour.
“I started to get pains. At first I wasn’t thinking ‘labour,’ but by around 5am I felt something was very wrong. I felt I was in labour even while telling myself I couldn’t be.” She started having contractions and a doctor was called: “I was examined and the doctor confirmed I was in early labour and I was taken to the High Dependency Unit at about 5.15am.” Jacob, her second son, was born there several hours later, 11 weeks premature and weighing just three pounds, on January 30.
Ashling was very frightened, she recalls: “When I had given birth to Noah, another woman on the maternity ward had gone into premature labour. She had been really frightened. Now I was in that position and I remembered that woman’s fear. I realised I was living her fear.”
In previous years, Aisling had lost triplets in one pregnancy and had also lost a baby in a separate miscarriage, which intensified her anxiety.
Like most premature babies — one in 10 babies born in Ireland are premature — Jacob had trouble breathing and feeding after birth and remained in the neonatal intensive care unit for seven weeks.
Ashling says the experience of premature childbirth was “terrifying, and emotionally challenging”.
“Leaving the neo-natal unit is truly terrifying because it means you’re out on your own and your support network is gone — suddenly it’s all down to you.” However, all went well, and Jacob is now healthy and thriving.
“You wouldn’t believe it,” says Ashling. Although he has been slower to meet developmental milestones than Noah, “I feel he’ll catch up,” she says. “Jacob is so perfect, we have been so lucky. He reaches his milestones later than Noah would have but you can’t compare the journey. He’s as tough as nails.”
Parenting a premature baby is a very different affair to looking after a full-term baby. That’s partly because the difficulties which result from a premature birth can have emotional and psychological impacts on the parenting role — and more parents who are at risk of a premature birth, should be more prepared for the challenges involved, believes Mandy Daly, director of advocacy and policy making at the Irish Neonatal Health Alliance (INHA) and mother of a 10-year-old daughter Amelia, who was born 15 weeks premature.
“We feel that there needs to be a greater awareness amongst parents about the risk factors which pre-empt a premature birth — these could include lifestyle factors such as age, obesity and the use of fertility treatment, which have all been identified as the leading factors in premature births,” she says.
“Families find that the parenting role is fractured or interrupted by the fact that a baby is premature. There may be a difficult pregnancy and an emergency delivery. 40 weeks is the normal delivery but some people only get as far as 23 weeks, so all your expectations of parenting are turned on their head,” Mandy explains.
On top of that, a mother may not even see her baby at birth, as a premature infant may have to receive immediate medical attention, be placed in a ventilator — or the mother herself may have had a medical condition such as pre-eclampsia or cardiomyopathy which may require medical intervention.
All of this necessitates separation, which, in turn, can have a psychological and emotional impact on the parenting role — there may, for example, be bonding or attachment issues as a result of a difficult or uncertain pregnancy, she explains. And then, when an infant is in the Neonatal Intensive Care Unit (NICU) of a hospital, the mother may not always be sure what to do for her baby, or in fact, even be aware that she can do anything for her baby.
In fact, the theme of this year’s World Prematurity Day is the promotion of family-centred care in NICUs – the INHA is launching a special brochure on family-centred care Better Together- a Family-centred Care Guide for your Premature Baby, which explains what parents of premature babies can do for their baby when the infant is in the NICU.
Some parents may only be able to stand and observe their baby, recording how he or she interacts with its environment, while others can, for example, practise comfort holding — gently cupping the baby’s head and feet while he or she remains in the ventilator, Mandy explains.
“It’s also important that mothers are encouraged and supported to express breast milk,” she says, adding however that currently the Irish hospital system lacks enough lactation consultants.
“We need far greater numbers of designated NICU lactation consultants,” she says, adding that the organisation would also like to see a change in the approach of NICUs to family-centred care, a more consistent policy of allowing parents to be more involved in the care of their premature babies is desirable, she says.
“In some hospitals, parents are actively encouraged to participate in the care of their premature baby, and in others they are not sure what they can do.”
More and earlier interaction between parents and their premature babies has very beneficial outcomes she says; earlier discharge home, better neuro-development outcomes, better attachment, better bonding and improved quality of sleep in the infant are examples.
Family-centred care is something Dr Anne Doolan, neonatologist in University Maternity Hospital Limerick would like to see implemented — and in special, purpose-designed NICUs: “We know it’s better for parents to be around their babies,” she explains. However, most NICU’s aren’t set up in a way that facilitates families so parents cannot consistently stay with their babies when they are in-patients in hospitals.
“We know it’s better for parents to be able to stay with their babies because we know that babies whose parents stay with them leave hospital sooner and have improved outcomes,” she says, adding that the design of future neonatal units needs to take this into account.
Internationally, the design of neonatal units increasingly takes into account the need for a ‘family room’ where parents can care for, and sleep with the baby if necessary.
“None of these are available in Ireland at the moment — they are in countries like the US, Canada, Germany. It would make perfect sense and it really works,” she says.
Another issue is staffing numbers — ideally a very small pre-term baby would be cared for by one nurse — says Doolan, but staff numbers in Ireland mean a nurse might have to look after a number of small pre-term babies. The number of neonatologists in Ireland is also below the recommended international ratio, she says, adding that addressing these issues would bring about improved outcomes for parent and their babies.
There’s also a need for greater provision of counselling for parents of premature babies, Dr Doolan says: “Some units would have some support and some do not. What is there is inconsistent and not available on a formal basis across the health service. Staffing and space are issues for parents. . “It’s a huge thing to have a small sick baby in ICU. Our midwives and neo natal nurses are fabulous but there is no formal structure to support these families – and we need one.”
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