Hannah Joshi has worked on the neonatal intensive care unit (NICU) at the University Hospital of Wales for ten years. She qualified in 2008 and although never had clear plans to become a NICU nurse, she applied for a staff nurse position on the unit planning to rotate after a year but never left.
Hannah says: “There’s something really special about being a NICU nurse. In a ‘normal’ situation after a baby is born the mum and dad takes their baby home a day or two after the birth. Part of the joy of that is introducing your new baby to family and friends so that they can get to know them too and share the experience with you. When your baby is on NICU visiting is restricted for infection prevention purposes so that’s not really possible. For weeks and often months the only other person who really gets to know your baby other than you is your nurse. Despite the extremely difficult situation these parents find themselves in, you are part of that new family’s firsts and that’s a real privilege.”
The condition of a premature and critically ill baby can change rapidly and often unpredictably and as each baby’s situation is different it can be difficult to provide parents with the assurances that they are desperately looking for. It’s why mums and dads always describe the NICU experience as a “rollercoaster ride”. Hannah says that a big part of her role as nurse is to prepare new parents for the ups and downs ahead of them and support them through it.
“There isn’t anything that can prepare you in advance for being a NICU mum or dad so even if you know during pregnancy that your baby is going to be admitted on to the unit, parents often arrive in a state of shock. One of the first questions they’ll usually ask is when they can hold their baby which is obviously the most instinctive thing in the world to want to do. It’s sometimes impossible to give a definite answer to that question but we know it can be days and sometimes weeks. Initially too a baby can’t wear clothes as we need to be able to assess them and the bedding is ours too so even the smallest things that helps a parent to connect to their baby aren’t possible. During that time we try to find nice little things for them to do like moisten their baby’s mouths with a cotton bud or placing their hands on their baby to provide comfort – anything that makes them feel like they’re being a mum and dad.”
NICU nurses work in 12 hour shifts, starting at 7 and ending at 7:30. Each shift begins with a safety briefing where the team are told about any critical cases, new admissions or potential concerns around infection. They are each then allocated an area to work in. In ITU the ratio is one nurse to one baby, in HDU it’s one to two and in the nursery it’s one to four. The nurse will then do a handover with the person coming off shift which includes a top to toe assessment of each baby he or she will be caring for.
There is no such thing as a ‘normal’ day on the unit but when Hannah is working on the ward (she is also now a practice educator on NICU) she frequently works on the intensive care part of the unit where babies are often awaiting surgery. The NICU at the University Hospital of Wales is the only unit in the country which provides surgical care to premature or critically ill babies and many are often transferred from other areas in Wales for these procedures.
Hannah says: “The unit is open access to parents so as there are no visiting times they’re often here first thing. We usually start the day with ‘cares’ which, if it’s a surgery day, can be even more important because they want to be with their babies before they go to theatre. We often need to encourage parents to get involved in daily cares to begin with, not because they don’t want to but because the wires and tubes can be intimidating. Changing a nappy if you haven’t done it before can be daunting enough but imagine trying to do it through an incubator window on a baby that only weighs 600 grams!”
“After the doctors’ ward round at 9am, I’ll do a full check on everything I need to transport the baby to theatre before the surgeon comes up to go through the consent forms with the parents. There’s often quite a lot of medical jargon involved at that point so I’m on hand afterwards to answer any questions.”
“Being a NICU nurse, you often have to manage the balance between the need to be completely focused on the baby’s medical requirements and the desire to support parents. You feel that very acutely when you’re in the delivery room straight after a birth where you’re working hard to stabilise a baby but are also very aware of the mother behind you, anxiously waiting for you to turn around and give her reassurance that things are ok. It’s the same before taking a baby down for surgery too. You know how vital that theatre slot is and of all the people waiting, prepped to start their work but you’re also trying to balance that with the needs of the parents who are very frightened and worried.”
After saying goodbye before surgery, mums and dads generally tend to leave the unit while they wait for news so that’s when I’ll usually go for a quick break. I then get called back down to theatre when the surgery has finished where I’m given a full handover before checking myself that the baby is stable enough to be transported to the unit. Once we’re settled back in I call the parents back and they’ll stay with us then for as long as they can. Sometimes parents have other children they need to get home for but with others we have to persuade them to leave and get some rest. We always try to reassure them by saying that we’re always honest about their baby’s condition and if we’re worried we’ll tell them and call them back if they’re not there. But the guilt and anxiety they feel at the thought of leaving their baby can often be too overwhelming to allow them to spend any more than the shortest time possible apart from their child.”
When asked whether as a team they are aware of how loved and highly valued they are by parents even after their babies have long since grown up, Hannah has to think for a while. She says: “I suppose you get a bit of that when you tell people what you do. They often say how amazing it is and that they could never do a job like it themselves but I always just think people can’t really fully understand unless they’ve lived it and experienced the huge rewards that it brings. From a day to day perspective though, I think we’re all far more likely to be critical of ourselves than self-congratulatory.
Hannah often gets asked how she manages her own stress and emotions in such a highly charged and intense environment, particular since becoming a parent herself almost two years ago.
She says: “Becoming a mum undoubtedly changed me because I can’t but help relate on a more personal level now. But nursing is all about caring and for all of us, seeing the parents’ reaction to difficult situation is the hardest part. In an emergency, as a professional, you go on to autopilot. You’re pumped with adrenaline and absolutely focussed on stabilising your patient. It’s only after when it’s calmer again and you see the shock and fear in the parents’ faces that it sinks in and at those times it can be difficult not to react emotionally yourself. I’m always very aware though that it’s them that’s going through the worst possible experience of their lives. It’s them that’s had their baby taken away straight after birth, that have had to go home to an empty house without them, and are now having to stand by helplessly and watch as difficult situations unfold. I can only feel a fraction of what they’re feeling and it’s important for me to respect that.”
Thankfully most of the babies treated on the unit eventually do get to go home but there are those who don’t and Hannah says that it’s important for them all as a team not to shy away from that and respect and remember the babies that have died. She says: “As terribly heart-breaking as providing end of life care to a baby is, it’s actually a great privilege to support a family through that time. It may sound strange but we want to make sure that the memories created at that point are the best they can possibly be because we know that those parents will remember them for the rest of their own lives. It’s the last thing we can do for that family before they leave our care so we take time to make sure that we get it right for them. We help them make footprints and hand prints and to dress their babies if they want to. After a baby has died it’s often the first time a parent will have held them without wires and tubes and that time can be precious and should never be rushed.”
Hannah feels that the new emotional support service which will be funded as part of the last phase of the Tiny Lives Appeal will be a real benefit for both parents and staff on NICU. She says: “It’s very hard to relate the experiences of a NICU mum and dad unless you’ve been through it so despite the very best intentions of family and friends, it can be a very isolating experience. Even at points where your baby is doing ok, you’re grieving what you thought you were going to have while at the same time riding this extreme rollercoaster that you have absolutely no choice but to stay with no clue when it will end. Parents don’t have space to process what’s happening at the time which can sometimes work well as a temporary coping strategy but can mean that they find it harder to process and cope with afterwards. It’s vital that parents get the support they need to cope at the time so that they come out ok at the other end – for them and their baby.
“I think the service will be really valuable for staff too. “Our professionalism is very important to us but you couldn’t be a nurse if you were entirely detached because our whole job it to care. We have our coping strategies that help us to deal with the pace, environment and the extremes of emotions but we’re people too and we’re fellable. Having the new service to provide support to the team too can only be of benefit to the families we care for, which is why we’re all here in the first place.
Despite the intensity of the NICU environment and the sadness that can come with it Hannah says that she genuinely can’t think of a more rewarding job. She says: “We’re there to support parents through the tough times but we’re there for the happy times too and we make sure to celebrate every milestone no matter how small they can be. You feel such excitement for a family when you’re preparing them to go home and when some come back to visit months or even years later, you always remember them and the once fragile little things they are, even as they’re hurtling down the corridor at 100 miles an hour.”
To find out more about how the Noah’s Ark Charity supports premature and critically ill babies, visit our Tiny Lives Appeal page.