After the neonatal unit: ‘Something like this… it changes you forever’

Baby Odhrán weighed a little over 1kg when he was born

Premature babies, or ‘preemies’ as they’re affectionately called in maternity units, face a tough fight but are well cared for by neonatal staff across the country. Though their parents run a gamut of emotions, writes Kelly O’Brien

Baby’s first Christmas is a special time for families — but not all newborns get to spend the big day at home.

All across the country, hundreds of prematurely birthed infants are celebrating the season from the confines of their incubators, tucked into the special neonatal wards of hospitals dedicated to keeping pre-term babies alive and kicking.

While the parents would love nothing more than a Christmas at home with their new bundle of joy, they realise it’s where they need to be.

This is certainly the case for mother of four Laura Devitt, who went into an early labour with baby Brídín 10 weeks ago. The Tipperary woman is currently visiting her daughter in Cork University Maternity Hospital (CUMH) — Brídín is not expected home until late January or early February.

“The staff here at the CUMH are really helping us through it. They are fantastic, they really are,” said Laura.

Other mothers are thanking their lucky stars they get to spend Christmas at home with a happy, healthy child who they weren’t quite sure would make it.

“Playing Lego or reading stories with my two little boys is something I never thought would happen. We came very close to having to visit a grave instead,” said Wexford resident Elaine Ní Bhraonáin, whose son, Odhrán, was born prematurely at 30 weeks.

“We still have to be very careful during wintertime, if he develops a cold, that it doesn’t go to his lungs as they are still affected.”

Neonatal nurse Kate O’Halloran said CUMH was ready for the big day, with lots of Christmas decorations and the usual warm welcome for parents of ‘preemies’.

“But it’s difficult because in our unit, for infection control, we don’t allow anybody other than mum and dad in,” she explained.

“So siblings can’t visit. Sometimes they will come in and look in through the window. That’s the closest a lot of them will get so it can be very tough on families to be separated and trying to explain to siblings that this baby is here but you can’t meet them for a while.”

Kate, the youngest member of the team, has been working in the unit for nine months. Incredibly, the 24-year-old didn’t just start her career there — she also started her life there as she too was born prematurely in the neonatal unit.

Sometimes I tell parents that fact, and it seems to help. It just felt right to come here to work. And I think I made the right choice because I love it here, I really do. I couldn’t imagine working anywhere else.

Elaine’s story

Baby Odhrán on the mend, in mother Elaine’s arms. He spent 50 days in neonatal intensive care, and a further month in special care.

Falling pregnant with her second son was a joyous occasion for Wexford resident Elaine Ní Bhraonáin and her husband Dean. Little did the couple know the pregnancy would be marred with complications — and their baby, born almost two months prematurely, would face a seemingly insurmountable battle for life.

“My pregnancy was normal up until 25 weeks when I had a slight bleed. I went to Wexford General Hospital to get checked out and was immediately transferred to Waterford. An hour after being admitted, I haemorrhaged and lost a huge amount of blood. Doctors were going to deliver the baby but I stopped bleeding and was given blood transfusions and steroid injections to develop the baby’s lungs,” recalled Elaine.

I spent the next month in hospital. During this time, I had five huge haemorrhages and numerous blood transfusions. It was physically and mentally draining and the loss of control when I was haemorrhaging is something that will stay with me forever.

Elaine’s doctor decided, at week 30, that the birth needed to happen immediately. Odhrán entered the world, weighing little over 1kg. “He was OK for the first eight hours of his life, then he could no longer breathe for himself. Within a day, he was on the highest form of ventilation, and put into an induced coma.”

She described it as “heartbreaking” to watch. “The ventilator was keeping him alive but unfortunately also caused his lungs to burst. He had bilateral pneumothorax meaning he had two holes in one lung and one hole in the other lung.

“The next three weeks were the hardest of my life. They counted his life in hours. He would have three good hours and then a very bad hour and we would be back at square one. When it looked as though we would lose Odhrán, the doctors asked, in the most respectful way, if we would like University Hospital Waterford to take care of the burial or if we had a family plot we could bury him in.”

But Odhrán clung to life. He underwent brain scans to check for brain bleeds and a lumbar puncture to check to for meningitis. He also received numerous blood transfusions and antibiotics to treat suspected sepsis.

“The treatment he received in that neonatal unit in Waterford was first class.

“He was treated with such respect and the nurses tried to include my husband and I in every decision regarding treatment,” said Elaine.

“I was breast-pumping each day but some days were so hard as I did not know whether my baby would even live long enough to drink it.”

Elaine and Dean were finally allowed to hold Odhrán when he was two weeks old. “The 45 minutes I had him out of the incubator felt like hours and I was so nervous because he was so tiny and fragile and he had so many tubes coming out of him which were hooked up to machines.”

Elaine’s family could see the toll the situation was taking on her. “My family was so worried about us during the entire ordeal. They could see how weak, traumatised, and scared Dean and I were about the unknown fate of our baby.”

One early morning, waking up in their house in Gorey, they received terrible news about Odhrán’s condition.

I could tell by Dean’s face that things had taken a turn for the worse. The nurse told us to come immediately to the hospital,” said Elaine.

“We drove the hour-and-a-half to the hospital dreading what was ahead of us. I was convinced he was gone but that the nurses didn’t want to break the bad news to us over the phone. We waited anxiously outside the neonatal unit to be buzzed in. I was gripping Dean’s hand so tight. We walked in and his two nurses explained that he was alive but had had a very bad night. They had administered antibiotics and thankfully they were already taking effect.”

The distraught parents didn’t leave baby Odhrán’s side that day. They sat, watched, and hugged each other — and little by little, hour by hour, Odhrán fought to survive.

After 50 days in neonatal intensive care, and a further month in special care, Odhrán was discharged. But, with lung issues and other persisting complications, the family weren’t out of the woods just yet.

“It was in quarantine at our house for a further six months. This was to prevent him getting any infections. Nobody under 10 was allowed into my home. No one who works with children or parents of a few children were allowed visit. It was very isolating but all I cared about was that my tiny little boy was home and was healthy.”

To celebrate Odhrán making it to his first birthday, the family presented the neonatal unit in Waterford with a hospital-grade breast-pump. Now, Odhrán is three.

“How do you thank someone for saving your baby’s life? The staff in the neonatal unit treated my little family as if we were their own. They were honest with us, sometimes when I didn’t want to hear the truth, they hugged me when things were going really bad and when things were improving, told me to go home, get a good night’s sleep, and come back fresh the next day. The neonatal staff in Waterford are part of our lives now,” said Elaine.

“My life will never be the same, having come through something like this. My life is now divided between ‘before Odhrán’ and ‘after Odhrán’. Something like this… it changes you forever.”

Stacey’s story

Stacey Dooley and her son Alexander at the Rotunda Hospital in Dublin. He weighed just one pound six ounces when he was born at 28 weeks. Twin brother Harrison weighed two pounds eight ounces.

“I was overwhelmed and scared… I felt like my body had let them down. I know now it was not my fault… but looking at my tiny children in the incubators riddled me with guilt” — the words of Dubliner Stacey Dooley, who gave birth to premature twins at Rotunda Hospital.

Stacey, a premature baby herself, was born early at 34 weeks. “My mam was taken in for haemorrhaging while pregnant with me. She also suffered from a bad kidney infection and was hospitalised for a number of weeks whilst pregnant with me. During this time, the medical staff realised I wasn’t growing like I should have been and was very small,” said Stacey.

“At 32 weeks, the doctors confirmed I had stopped growing and then I was born at 34 weeks.”

With her twin boys, Stacey knew there might be issues. She was scanned every two weeks until week 20 of her pregnancy when things took a turn for the worse — one of her boys was not growing as well as he should have been.

At week 26, one of her boys, Alexander, was diagnosed with intrauterine growth restriction, a condition which can lead to stillbirths.

At first that meant Alexander was no longer getting the nutrients he needed, as the blood flow to him via the placenta had almost ceased. The condition then progressed to the stage where the blood flow essentially reversed, putting both twins, linked by the same placenta, at risk of cardiac failure.

That afternoon I had my twins by emergency caesarean section at 28 weeks. Alexander weighed 1 pound, 6 ounces, and Harrison weighed 2 pounds, 8 ounces,” said Stacey.

“Harrison had lung issues, feeding issues, and premature apnoea but he overcame all that and was allowed to come home. Alexander was very ill from the start. He contracted necrotising encoloritis, a debilitating infection.” She almost lost him to the condition.

“Thanks to one doctor who wouldn’t leave his side, Alexander survived the first night. He wouldn’t be here today without him. Alexander needed surgery on his bowel and intestines to remove the infected tissue… but he was too weak to survive the operation. All I could do was wait and hope,” said Stacey.

“For a month, Alexander was on morphine and was intubated. He was receiving artificial fats which caused some damage to his liver. His lungs were weakened from intubation and steroids were required to try and get him breathing on his own again.

"Finally, Alexander was breathing on his own again. He had withdrawals from the morphine which I can assure you is a horrible thing to see. A tiny baby shaking and in pain… and all you can do is cuddle them.”

Alexander proved to be tougher than he looked and managed to pull through. Now two years old, both twins are thriving. Alexander still undergoes physiotherapy, and both he and Harrison have special dietary needs, but it’s all “very manageable”, said Stacey.

Twin brothers Alexander and Harrison, who were born prematurely at the Rotunda.

Only time will tell if their traumatic premature births will affect them later in life, but for the moment, Stacey is just happy they are here.

“The nurses that looked after me were amazing and did everything to me make me feel comfortable and supported. My twins received amazing care from the NICU staff at the Rotunda. They wouldn’t be here today without them. I’m eternally grateful.”

Mandy’s story

Mandy Daly and her daughter Amelia, 12, with an photograph of Amelia taken in the Rotunda Hospital in the days after she was born prematurely at 25 weeks and 6 days. Picture: Moya Nolan

No first-time mother-to-be expects to find herself in the delivery suite after little more than six months of pregnancy — yet it’s where 4,500 Irish women find themselves every single year.

And it was the exact situation Wicklow resident Mandy Daly entered when she suffered a placenta abruption and her waters broke after just 25 weeks’ gestation.

Mandy’s baby girl, born almost three months too soon, entered the world by emergency caesarean section — smaller in size than her mother’s hand, and weighing just 780g. When she was born, however, Amelia was unresponsive.

“The delivery room was deathly quiet as one half of the room fought desperately for nine whole minutes to breathe life into Amelia’s tiny skeletal body… and the other half fought to save my life,” recalled Mandy.

The medics at the Rotunda Hospital in Dublin were successful on both counts and baby Amelia was whisked off to receive further treatment. Mandy was on the mend, but Amelia wasn’t out of the woods yet.

I did not get to see or hold my daughter immediately after her birth and the physical and emotional emptiness that ensues following an emergency delivery was compounded by the stark reality that my daughter might not survive.

Mandy and her husband John first saw their baby a full 24 hours after she was delivered. Mandy was filled with joy at the prospect until she stood outside the Neonatal Intensive Care Unit and realised she couldn’t tell which baby was hers. The realisation only bolstered her guilt.

“A moment which should have been filled with joy and gratitude was tainted by pure guilt that the pain and suffering my little girl had had to endure was entirely my fault. The irrational guilt that accompanies a pre-term birth cannot be quantified. Even now that guilt still lives within my heart.”

Mandy was discharged from hospital after three days, but had to leave baby Amelia where she was. Every day, the mother would travel for two hours to sit beside her baby’s incubator for 14 hours at a time, desperately wanting to reach in and touch her, but unable to.

Every time she entered the hospital, she felt “heart-stopping fear” and wondered if this would be Amelia’s last day.

“Day after day, I prayed she would overcome the myriad of life-threatening infections. I watched her endure a multitude of painful medical procedures. I screamed on the inside every time she had to be resuscitated. I witnessed a total of eight life-saving blood transfusions carried out on my baby, and I hoped she would find the strength to defy the odds — odds that at times looked very much stacked against her,” said Mandy.

“It broke every ounce of my physical and emotional being. The heartache of leaving her each night as we travelled home to our empty house is indescribable. My heart had been ripped from my chest the day she was born and every night as I said goodbye to her it broke a little bit more.”

Four weeks after her birth, after several late-night dashes to Amelia’s bedside when she had taken a turn for the worse, the parents finally got to hold their baby for the first time. “She still weighed only 900g and even as she lay skin-to-skin against my chest I couldn’t feel her,” said Mandy.

After three months, the parents finally got to welcome Amelia home — just in time for Christmas 2006.

While the occasion was a happy one, the following 12 years were going to be tough on all involved. “Suddenly we found ourselves in the role of carers for Amelia, a task that neither of us felt qualified or confident to take on. Amelia was diagnosed with chronic lung disease and her breathing or lack of it at times, continued to be an issue for the first 12 months at home. She had to be attached to a breathing monitor by night and we got quite adept at jumping out of bed when the alarm to indicate that she had stopped breathing would activate in order for one of us to restart her breathing again,” said Mandy.

“As with many preterm infants, feeding has always been, and continues to be, an issue for Amelia. Her growth rate was delayed as a result of her feeding issues and for a number of years we found ourselves embroiled in a vicious circle of specialists all trying to get Amelia to eat.

Finally, at age three, we discovered that Amelia suffers from oral aversion, most likely related to her prolonged time on a ventilator during her first four weeks of life, and since then we have adapted our approach to her feeding issues.

Amelia is now 12 and experts say she has done remarkably well for a baby of her gestation. Unfortunately, Amelia suffers from dyspraxia, a sensory processing disorder, social anxiety, and eating issues — but these issues are managed to the extent that to the outside world, she is a happy pre-teen surrounded by friends.

Even still, there can be no doubt having a preterm baby was an experience that changed Mandy’s life forever. Eager to share her story and help others who find themselves flung into similar situations, Mandy teamed up with five other parents of premature babies to set up the Irish Neonatal Health Alliance charity.

Now, when she is not with her family, she spends her time volunteering with the INHA to support and empower families affected by prematurity by advocating increased awareness, improved pre-conceptual, ante-natal and postnatal education, equitable and standardised neonatal care, and improved long-term care for both the premature baby and the family.

“From the humble beginnings, of a small group of volunteer parents, the INHA has penetrated every aspect of the neonatal space in Ireland,” said Mandy.

“We have established a collaborative platform to facilitate national and international stakeholders working together to reduce the incidence of preterm births, empower parents, standardise care, and improve outcomes. I’m incredibly proud to be involved.”

A midwife’s story

Ruth Evans, clinical midwife manager, Laura Devitt, from Cashel, Co Tipperary, with baby Brídín and Kate O’Halloran, neonatal nurse, who was herself a premature baby, and now works at CUMH. Picture: Jim Coughlan

For Cork woman Ruth Evans, dealing with premature births is all in a day’s work.

A senior midwife at Cork University Maternity Hospital, Ruth has been working with premature babies,

referred to fondly as ‘preemies’, for the last 25 years.

“I’m in CUMH since it opened in 2007 but I was in the Erinville and Holles Street before that… so I’ve worked probably 25 years in neonatal at this stage. A long time,” she explained.

The unit caters for babies born as early as 23 weeks. Some are born weighing only 500g — as light as half a bag of sugar.

“The babies are so tiny, and they’re gorgeous… but not all of them go home, unfortunately. There are babies that don’t make it through. We might manage to keep them alive for a few weeks or a few hours and eventually they can’t surmount the task in front of them. The worst part of the job definitely is when it comes to that, when you know you’re going to lose a baby,” said Ruth.

“You’re seeing parents at an extremely vulnerable time. Some of them have gone through such a time to get this baby, years of IVF or whatever. And you build up a huge bond with the parents. You become their friends, really, because some of them could be with us for six months. But whether you’ve only met the parent that day, or a week ago, or a month ago… it’s awful to have to tell them their baby isn’t going to make it.”

While staff members are careful not to break down in front of parents, it’s impossible not to be affected.

You are emotional, there’s no doubt about it. But you do gain experience with years, on how to deal with it. If you have an extremely stressful, busy, distressing shift, it does play on your mind for a while.

"You would bring it home with you. But also when you go home, you have your own family who also needs you, so you have to try and put it into compartments. But you are affected by it and you do think about it for a while. But you try not to talk about it.”

Thankfully there are more happy endings than sad ones — the best part of the job is saying goodbye to a premature baby who has thrived under the care of the neonatal unit. “We get to see the babies growing from 500g to maybe 4.5kg kilos by the time they’re going home maybe four or five or six months later. It’s fantastic to see that,” said Ruth.

“There’s a sense of pride you feel when they leave and you know you’ve done a good job with them. Their time in ICU is difficult, but then when they come out of ICU there’s still another two or three months of work to get them independent and off oxygen and feeding properly… and so we’re very proud of what we do here.”

One might forgive the CUMH staff for being teary-eyed when they say goodbye to a family they have worked with for half a year, but they know they will see them again — most parents of premature babies return regularly to update the nurses on their child’s progress.

“A lot of them would come back, yes. Some of the parents find it very difficult to come back with their child, actually. They find coming in the door they’re nearly having a panic attack because this is where it all happened, but at the same time, they want us to see the progress and the milestones along the line,” said Ruth.

“They might also come back for a clinical appointment in the hospital, and so they’d pop in then too. We also hold an annual coffee morning on World Premature Day in Brú Columbanus in November every year and the amount of kids that come to that — all the way up to teens — is fantastic. You won’t remember them all, but they’ll remember you.”

While some go on to progress as normal, others develop issues as they grow: Sometimes lung issues stemming from their prematurity, sometimes issues stemming from the lifesaving treatment they received.

A large percentage would have mobility issues, learning difficulties, educational difficulties, sight, hearing… there are quite a lot of complications they can have.

“A lot of the treatment we have to give can cause other problems. Then the brain is so immature they can have brain haemorrhages in the early months or so and that can leave them with cerebral palsy or learning difficulties. You just don’t know,” said Ruth.

“Your baby might look good and healthy going home, until they start not reaching milestones in the first year or two and you start to realise there are issues. But they’re involved in early intervention from the minute they leave the hospital — speech, language therapy, physical therapy, occupational therapy — so everything is picked up fairly quickly. But there are difficulties for them, no doubt about it.”

A nurse’s story

When Kate O’Halloran was born prematurely at the CUMH, her parents would never have guessed their daughter would start her professional career at the same unit, 24 years later.

Cork woman Kate, now a neonatal nurse at the facility, often tells mothers and fathers about her own premature birth — she finds it helps them realise there is a potential future there for their child, regardless of how tiny and underdeveloped they might currently be.

“Parents can be very anxious, very emotional, they get upset very easily. You would have to work through that time with them and help them see the light at the end of it. I suppose things won’t always go to plan and those days are tough, but the good does outweigh the bad. We do see more good stories than bad stories,” explained Kate.

Sometimes I tell parents I was premature and they can kind of see a projection into the future for their child. They usually find it quite reassuring. It gives them a bit of hope.

Amazingly, Kate now works with one woman who helped care for her as a newborn. “We kind of found that out coincidentally. One of the girls knew I was born prematurely and she was just saying it in the staff room one day and we worked out one of them worked there at the time and had looked after me.”

Growing up with the knowledge of her premature birth affected Kate’s career choice later in life. “When I was qualifying, I had to look and see what area did I want to work in. Since I started my life out in the neonatal unit, it kind of seemed fitting to start my career there as well. It seemed like a nice fit. And I think I made the right choice.”

She has been there nine months so far, having studied in UCC, and is the youngest member of staff. It has been a short timeframe, yet Kate has already had to deal with the toughest part of the job: infant mortality.

“When you see a baby who isn’t improving, or who you know isn’t going to live, that’s very tough.

“It’s very tough for the parents, and for us, and you try and give them that time to make memories with their baby,” she said.

“Or to see a baby who has been quite well and who has deteriorated… that’s very tough for parents to watch. When it’s looking bad and it goes downhill, there is some time to process the information and try come to terms with it. But when a healthy baby takes a sudden turn… those are tough days.”

Dealing with traumatic cases on a daily basis is extremely tough. It can be hard not to take the grief home.

“Yes, it can be hard to switch off from it. If you have had a tough day and things haven’t gone right, maybe a baby has been deteriorating a little bit, those days can be rough. You have to try your best not to bring it home with you, but it’s always there a little bit in the back of your mind,” said Kate.

But when you get to send a baby home, that’s lovely. There’s nothing better than saying goodbye to a baby who has been very sick and you didn’t think you’d see this day but now you’re sending them off home and they are in the car seat and the parents are the happiest you’ve ever seen them.

And thankfully they do come back to visit. “Parents can spend a few months in the unit and they make great relationships with the staff and you become very personal. You get a little bit attached. You really do get to know the babies personally, and the parents. You know a lot about them. So I think they feel more of a draw to come back to the neonatal unit than someone who has been in for two or three days and had a full-term baby. They haven’t had that two- or three-month relationship,” said Kate.

“The nurses get very excited when they come back and they go out to see them and how far they’ve come. So I can’t wait for the day I get to do that and I get to welcome back a baby that I helped care for. But they tend to come back when they are toddlers, so it will be a few years for me yet!”

Laura’s story

When then-mother of three Laura Devitt was pregnant with baby number four, nobody thought she would go into labour prematurely.

All of her other children — Maria, Róisín, and Ronan — were carried to full term. Baby Brídín, however, had other ideas. She made her appearance 10 weeks ago, at just 25 weeks old.

“Shock is the only word to use,” said Laura. “We didn’t think this would happen at all with me, given that I had three others, big babies, all full terms; this was completely out of the norm. She was the only one that was premature.

“We kind of just went with it. Whatever was happening was happening and there was nothing I could do to stop it so I had to go with it and we just hoped everything would go OK.”

Laura went straight to her hospital in Clonmel when her waters broke, but, as the facility couldn’t cater for babies under 32 weeks old, she was sent to Cork for treatment. The very next day, Brídín was born.

She was taken directly into the neonatal unit when she was born so it was a few days before I got to hold her. I didn’t mind it that much because I knew it was what needed to happen and I wanted her to get the care she needed. In an ideal situation, you would love to hold them straight away, but I knew she needed the care so I was quite happy for them to take her and tend to her needs,” said Laura.

“She was born and she took a breath and they were happy with that… but later on, she had to be incubated, and put on a ventilator. And she was on that then for a day and then she was on a breathing machine for a while… I was worried. You don’t know what’s going to happen. But the staff didn’t seem fazed by her, and that was reassuring. It made me think it was all normal.”

The name Brídín came to Laura while she was in the ward.

I didn’t even know there was such a name so I looked it up on my phone and sure enough it was, and the meaning of it was power and strength. So I knew that was her. I think it suits her.

Brídín is spending her first Christmas in CUMH as she won’t be ready for discharge until late January or early February. The situation has been tough on Laura, husband Daniel, and their three young children.

“I think the biggest thing for my other children was to get used to was the fact that I was gone to Cork and they wanted to know when I was coming home. As for Brídín herself, I think it’s a little bit surreal for them because, other than videos and pictures, they still haven’t seen her,” said Laura.

“But the staff here at the CUMH are really helping us through it. They are fantastic, they really are.”

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