Ireland’s smallest surviving premature baby: ‘I broke down in tears with fear’

More than two years ago Katie Keogh gave birth to Charlotte, who remains Ireland's smallest surviving premature baby. She weighed just 390g (less than 1lb) at birth and was delivered by Caesarean section.

“My baby Charlotte was born on June 20th, 2019, and was severely growth restricted due to chronic histiocytic intervillositis which causes placental failure,” she says. “It is extremely rare but my son, Vincent, who was born sleeping in May 2017 had the same placental condition which showed up during his postmortem. This gave me an opportunity to gather my own research on it before Charlotte was even born.”

While Katie was pregnant, scans showed that her daughter was considerably growth restricted from 20 weeks and as time went on, she and partner Kevin prayed that their baby would survive. It quickly became clear that she would need to be delivered sooner rather than later.

“At 27 weeks we met with a consultant who told me that Charlotte had stopped receiving the flow from the placenta, and if she was left, we would have the same experience [as with Vincent] all over again,” she says. “So I needed to undergo a Caesarean section if I wanted to give Charlotte the best chance possible.

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I was scared [about the early delivery] but also excited that I was being given the opportunity to go one step further rather than waiting for another loss

"So I was given two steroid shots to help Charlotte’s lungs mature as much as possible for delivery and then was put on a magnesium drip to help protect her brain during labour.

“Being taken into theatre was the hardest part and I broke down in tears with fear. But Charlotte was delivered at 2.11pm, weighing just 390g. I gave her a quick kiss and then she was taken off to the NICU.”

Having survived the delivery, Charlotte received round-the-clock care throughout the 89 days she was in intensive care. Desperate to be with their baby, the new parents visited daily and after a fortnight were allowed to assist with some of her care and document her progress. “It was definitely a stressful time for us but the WaterWipes milestone cards helped us to celebrate each achievement, which was a huge boost for our morale and gave us something positive to focus on,” says the 32-year-old. “The first card we ever used was for when she had gained weight – which was a massive goal for us as she needed this to survive. She was born at 390g and eight days later she was 400grams, so was past her birth weight. The second milestone card we achieved was the kangaroo card which was the first time we got to hold her at just two weeks after she was born.

“Documenting this really helped to keep us going and when I sat down to look at the cards, I told myself that we had so many milestones to chart and look forward to. After a fortnight we were allowed to help change her nappy – she was so small I was genuinely afraid that I might break her leg, even though I have a background in childcare and have changed many nappies. She was tube-fed for 12 weeks and during this time I was able to pump milk at her incubator, which helped me to build an emotional connection with her and help get my milk through to her.”

After 13 weeks in neonatal care, Charlotte was allowed to go home with her parents to Arklow and Katie says that although they were thrilled with this new development, it was also extremely daunting. "We received 48 hours notice that Charlotte would be discharged but told that things could change, which was quite stressful," she says.

Luckily we were allowed to take her home and I cried leaving the unit as I had become so close to the nurses and doctors there who had become like family to us

“I was nervous going home as there would be no monitors or nurses around and although we were excited, we didn’t realise how much of a change it was going to be for her. She was quite unsettled for the first day or so as she had spent 13 weeks in the incubator or in a cot. I wanted to cuddle her all the time but that was actually painful and uncomfortable for her at times as she wasn’t used to this. I was treating her like a newborn baby who had just come home but she needed her own space.

“She also didn’t want to feed like she did in the hospital, so adjusting to those little things were difficult. The public health nurse told me to put her down in her cot and if she wanted to sleep for five or six hours, I should just relax about it – she would wake if she was hungry. After she said that to me, things were easier. Charlotte told me when she was hungry, when she was tired and when she needed her nappy changed – and two years later she still does.”

The new parents continued to have support from the neonatal unit who were on hand if they had any questions and both of their families also offered practical help and advice.

Charlotte is now two years old and, despite a shaky start, is doing great. "We are still close with the neonatal care team at the National Maternity Hospital who keep an eye on her and make sure she's still growing as she should be," says Katie. "We have been visiting Temple Street about her eyes as premature babies tend to struggle with their eyesight and she has an inward turn in one of her eyes, but the doctors are hoping as she grows the muscles will strengthen and it'll be resolved.

“Developmentally, she’s slightly behind on her gross motor skills as we’ve been told she has global developmental delay – so she only started walking in the last couple of weeks, whereas most babies start walking at 12-18 months.”

Mandy Daly, health director of advocacy and policy at Irish Neonatal Health Alliance (INHA) says it is often the little things which can make a difference to parents like Katie and Ken as they care for their premature babies. "The INHA's mission is to support and empower families affected by prematurity by advocating for increased awareness, family empowerment and long-term care for both the premature baby and the family," she says.

“The charity was founded and grew out of the experiences of such parents as well as their desire to help others who are on the same path. And many parents of premature babies have found that celebrating each milestone is a huge boost for their morale and provides them something positive to focus on.”