Coping with the distress of early births

Anyone with children remembers the moment of awe when they first clap eyes on their newborn babies. We marvel at their perfect little bodies and their minute fingers and toes, and wonder how we will manage to look after such a tiny bundle of fragility.

For many people, though, this fear is magnified when their baby is born prematurely. In Ireland, every year one out of every 10 infants is born too early, too small and too sick.

Today is World Prematurity Day and the Irish Neonatal Alliance (INHA) has launched a list of 10 things the parents of these 4,500 infants should be aware of as they aim to raise awareness of the issues faced by families with premature babies.

Paula Murphy and her partner, John, have five sons. Their three eldest – Dean (22), Eoghan (16) and Cillian (8) – were all born safely on their respective due dates at the end of a healthy pregnancy.

Spotting

However, last year when Paula was pregnant with their twin sons – Cian and Mark – she experienced occasional spotting during the first trimester and needed bedrest from 12 weeks onwards. Despite this precaution, her babies were born suddenly at 24 weeks, each weighing less than 2lb.

“I had three healthy pregnancies with no issues on my first three boys,” recalls Paula, “but I had problems from about seven weeks with the twins when I started bleeding on and off. Then from 12 weeks, I was put on bedrest for the rest of the pregnancy as I was experiencing very heavy bleeding.

“I was admitted to hospital on numerous occasions, the last being at 20 weeks when I had to stay in for 3½ weeks with complete bedrest. I was discharged on December 13th last year. The following morning I went into labour and was taken straight to Limerick hospital where I had an emergency section and the boys were incubated straight away and put into ICU.”

Later that day, the tiny babies (weighing 1lb 7oz and 1lb 11oz) were transferred to Holles Street hospital in Dublin by ambulance. Their dad, John, followed them up that evening and the next day Paula was also transferred.

“The boys were not given good odds of survival when they were assessed in Dublin,” says Paula. “They spent six weeks in Holles Street and a further nine weeks back in Limerick.

“They were born with many complications. Both had issues with valves in their hearts which hadn’t closed and both had chronic lung disease.

“Cian had to have laser treatment on his eyes when he was seven weeks old and also had a hernia which had to be repaired in Temple Street when he was five months old. Between the two of them, they had nine blood transfusions so we were constantly in and out of hospital.

“It was really difficult during those first few months trying to juggle our time between the hospitals and home, particularly when they were in Dublin as one of us would have to be up there and the other at home with the other kids.

“It was also extremely expensive as we were spending an average of €700 a week on hotels and diesel and had to keep the house and farm going at home – it was a tough time.”

Allowed home

Fifteen weeks after their sudden arrival last December, the babies were allowed home to their family in north Clare. Although they were officially over three months old, they still weighed less than the average newborn and needed a lot of care.

“When they arrived home, Cian was still only 5½lb while Mark was over 7lb,” says Paula. “They had a lot of ups and downs along the way and last year both suffered from seizures, Mark in particular had a very bad one which lasted 90 minutes and he had to be airlifted to hospital. We don’t know if these seizures are related to being premature or not, but they were very frightening.

“They needed a lot of follow-on care when they were first discharged and the services were fantastic. They had appointments for their eyes, ears and hearts and they saw a physiotherapist and an occupational therapist in the Clare Early Intervention Centre, as well as many other specialists. Overall, the care they received from everyone was amazing and we can’t thank the doctors and nurses enough for all they did for us.”

Despite their traumatic entrance into the world, Cian and Mark are now thriving.

On World Prematurity Day, Paula advises other parents of premature babies to put their trust in the experts and not to try to rush anything as there is nothing they can do other than be there for their children and families.

“After all the boys have been through, there are no lasting side effects apart from the fact that Cian will need glasses – other than that, they are doing great,” she says. “I would advise other parents who have had a premature baby to take things one step at a time as it’s a very long road.

“It is also important to stay away from Google as there are a lot of ‘worst-case scenarios’ on there. You just have to trust the doctors and nurses who are fantastic as are all the services offered and you will be linked up to these when your baby is released.

“There will be lots of appointments in the beginning, so any problems will be picked up early and there is a lot of great support out there to help you deal with anything. And, above all, it’s important to take as much help as you can from friends and family who will all want to support you.”

10 things to know about. . . babies born early Know your risk factors. These include late maternal age, infection, obesity, multiple birth, previous miscarriage or pre-term delivery.

Become an expert by learning as much as you can about your pregnancy, delivery and after-birth care.

You are your baby’s primary care giver and have an equal say in her/his care.

When your premature baby has been born, you are their voice and will be best placed to advise medical staff about any changes in behaviour or medical condition.

Ask for a Care Pathway Plan from the medical team. This will help you to know what goals your baby should reach.

Your premature baby needs breast milk.

Prepare for the winter season as premature babies are more susceptible to respiratory syncytial virus. Familiarise yourself with symptoms.

Your baby’s milestones are critical and knowing what is expected will help you to flag delays.

Self-care is essential. You need to look after yourself and accept support from family and friends.

It wasn’t your fault. Guilt is a common emotion, but the premature birth was not your fault and you did your best.

[ inha.ie ]

Irish Premature Babies (IPB) is Ireland's national charity to support families with a pre-term baby irishprematurebabies.com