Can you ever prepare for a premature baby?

Marc Tanguy is delighted that his biggest parenting worry right now is the tendency for his 11-month-old twin daughters, Eve and Zoe, to throw food around at meal times.

He reckons wiping mashed vegetables off the kitchen floor is the sort of normal thing parents have to do. Yet the introduction of Marc and his wife, Mary McCluskey (38), to parenthood has been far from “normal”.

Not only their baby daughters but also their eldest child, two-year-old Seb, were all born prematurely – the twins at 28 weeks and their son at 30 weeks, so all three of them were considered “very preterm”.

As is the case with the vast majority of the approximate 4,000-plus premature births, ie before 37 weeks’ gestation, in Ireland every year, the reason for the early arrivals was unknown. But it introduced Mary and Marc to a world of practical and emotional challenges that, like most people who haven’t experienced it, they were totally unprepared for.

“It’s not just that your baby is small and is in an incubator,” says Mary, as the couple sit with their three children in the living room of their Castleknock home in Dublin on a recent Saturday morning. “There is a whole big bag of emotions with it.”

Great pregnancy

First time around, Mary was having a “great pregnancy” – until Seb decided to arrive at 30 weeks. As their first-born, weighing 1.28kg (2lbs 13oz), was whisked away to the Neonatal Intensive Care Unit (NICU) at the Rotunda Hospital, both she and Marc were in shock.

“It doesn’t seem real; it’s like you have had some kind of procedure,” Mary says of the very quick delivery.

Marc remembers going to buy a newspaper and a bottle of Lucozade for Mary and then just sitting reading the paper for an hour until a nurse came up and asked if he wanted to go to see Seb, “and it was like ‘oh yes, we’ve just had a baby’”, he recalls with a laugh. But that first visit to his son brought home to him that he was a father.

“Just to see him with all the wires and he had a mask for oxygen over his mouth; it’s not really what you expect when you are first going to meet your child. It was quite emotional and you feel quite helpless because there is nothing you can do.”

That sense of powerlessness was what he found hardest, just sitting and wondering about tiny Seb’s every little movement – was it a good or bad sign?

You are trying to interpret the screens he is wired up to but you haven’t really got a clue, agrees Mary, who was afflicted by guilt.

“I felt I should have been able to hold on to him, like it was my fault. That went on for a long time. Even now it comes up every so often if they’re sick.”

Medical staff reassured the couple initially that Seb probably just needed time to grow. Although a few days later, a cranial ultrasound detected white matter in the brain, which can be a sign of a haemorrhage.

It wasn’t until after Seb could have an MRI done at a year old, which gave him the all clear, that his parents really relaxed about that.

Premature rates

Although the Irish rate of premature births, at 6 per cent, compares favourably internationally – it's almost 8 per cent in the UK and 12 per cent in the US – it is rising slowly. Worldwide, one in 10 babies is born too soon and the World Health Organisation highlights their plight with World Prematurity Day on November 17th.

While factors driving the increase in Ireland include the older age of mothers and more multiple births, it is also partly due to enhanced medical surveillance and recognition of complications, says consultant obstetrician Dr Etaoin Kent.

There is a distinction between premature births which happen spontaneously, without any identifiable risk factors, and those prompted by medical action due to a problem in the pregnancy, such as pre-eclampsia or intrauterine growth restriction.

“There is a huge amount of research going on in trying to reduce preterm deliveries,” she says. “Unfortunately, we don’t have any very good methods of predicting or preventing preterm deliveries.”

But Kent hopes that, in time, better tests and preventative strategies will be developed because “the consequences of preterm births are huge”.

More than two-thirds of perinatal deaths in Ireland are of babies born preterm. Among the survivors, the most serious short-term problems are respiratory distress and immature brains.

Life-long complications can include cerebral palsy, visual and hearing impairments, and poor health and growth. Even just a few weeks’ prematurity is linked to learning difficulties and behavioural and emotional difficulties.

High risk

Where women have been identified as high risk due to previous experiences, measures such as progesterone therapy, or a stitch in the cervix if appropriate, can be taken to try to stop it happening again. But there isn’t really anything that women themselves can do to modify the risk, she says, other than book early for antenatal care and attend scheduled appointments.

If medical staff can identify people who are potentially going to deliver early, “there are things that we can do that will improve the neonatal outcome, such as giving steroids, giving magnesium sulphate”, she says.

There are four tertiary maternity hospitals in the Republic offering the highest level of neonatal care – three in Dublin and one in Cork. Some of the smaller maternity units can deal with babies from, say, 28 weeks onwards, she explains.

There is very good evidence, adds Kent, that babies who are born preterm do better if they have been transferred to the tertiary centre “in utero” than those who are transferred “ex utero”, underlining the importance of identifying high-risk pregnant women.

Mary and Marc, who were keen to have a second child after Seb, were told that having one premature baby increased the risk of having another and her pregnancy would be monitored more closely.

So this time Mary went in for a scan at 10 weeks. The first thing the consultant said at the scan was that it was guaranteed they would be keeping a close eye on her “because it’s twins”.

Did they have mixed feelings at the news? “Probably all bad,” Mary replies. “It wasn’t good. It was a bit of an upset, like it was even more high risk. It had literally doubled the chances of something happening.”

Natural birth

Mary was only 28 weeks this time when she had a “show” at work in PWC and walked straight out of the offices to the Rotunda. Early the next morning, on November 25th last year, when she was being prepped for Caesarean delivery, Zoe arrived naturally followed, about 10 minutes later, by Eve and each weighing 1.1kg (2lbs 7oz).

“The big difference between Seb and them was that when he was born, he started to cry immediately, neither Zoe nor Eve did, there was no sound,” says Marc. “We had a good 10 minutes where I really feared the worst; I didn’t say it at the time. It wasn’t until they were whisked past us to NICU that we knew that they were alive.”

Staff had been working on both babies in the room initially and “in fairness, they do reassure you”, he acknowledges.

In hindsight, the couple believe that because they had been through it once with Seb, they were perhaps a little too complacent about the twins.

“We thought it would be the same road, that they just needed to grow,” says Mary. “And then we had a whole lot of things thrown at us which we did not expect.”

Zoe had respiratory problems, with fluid on her lungs, and also a grade two brain bleed. Eve had a less severe brain bleed but both needed multiple blood transfusions. And there was the added complication of having an older child to care for.

“When Seb was in NICU it was our whole world,” says Mary. But after the girls were born, she would spend the day in the hospital and then pick Seb up from the childminder. Marc, who works in Google, tried to go to the hospital early evening.

When Eve was discharged after six weeks, it was hard for the couple to visit Zoe until she too came home one week later.

“I kept saying I just want them under one roof and not to have to leave the house,” says Mary. “Trailing into the hospital in the wind and the rain – this is not what maternity leave is about.”

Maternity leave

She feels strongly about the fact that no allowance is made for prematurity when it comes to maternity leave; it is triggered by the early birth.

It didn’t seem fair to her that women sitting in the hospital prenatal ward, incubating their babies towards their due dates, could get sick leave, while her babies were also being incubated, albeit it in a neonatal unit, towards their due date but her maternity leave had been ticking down from the moment they arrived.

“People forget that. They think they are born as babies but really they are still meeting the end of their gestation.”

She thinks it would be fairer if maternity leave started from the day a premature baby is discharged from hospital. If Mary had gone back when her paid maternity leave was finished, the twins would have been, developmentally, only three months of age, which is way too young to be putting them in a creche, the couple point out.

However, both know that although they have been unlucky in their birth experiences, they have been very lucky too.

Living in Dublin, they didn’t have the expense and disruption of looking for temporary accommodation, or long commutes, while their babies were in neonatal care. More importantly, all three children are doing really well.

Zoe’s legs are a “little tight”, says Mary, and she is due an MRI on her brain next month but they are hopeful she will get the all clear that her sister has already got. The three of them still attend the retinopathy clinic at Temple Street hospital and they will get monthly injections through the winter to boost their immune systems.

“We’re getting to the point now where we can actually enjoy them,” says Marc. “The first six months was like a military operation and even to connect emotionally with them was quite tough.”

The worst part was feeling that they were “force-feeding” their daughters because they didn’t want to take the quantities of the special formula milk they needed.

With a premature baby baby being born somewhere in Ireland every two hours, what’s their advice to other parents?

“It does get easier. Everything is just a phase,” says Marc.

“Be kind to yourself. I really beat myself up,” adds Mary, who also found keeping a diary really helpful. She can read it now, to remind herself of how far they have all come.

For more information and support, see inha.ie; also irishprematurebabies.com

swayman@irishtimes.com