Amanda Burgess didn’t know what to expect when she went into labour three months early. With the help of Wellington’s Neonatal Intensive Care Unit (NICU) and our partner charity The Neonatal Trust, Amanda and her partner Michael made it through to the other side with a beautiful baby and smiles on their faces. Here is their story.
Sweet baby James arrived twelve weeks before he was due. My partner Michael jokes that I’m always early for everything but James has really one upped me on this one. I thought I had food poisoning and eventually rang my midwife. I told her how I was feeling and she said ‘That’s not food poisoning, I’m coming to pick you up.’ When I got to the hospital, they told me that I was in labour.
Once I arrived, there were a lot of conversations about me not leaving hospital until I had a baby, whether he arrived the following afternoon or twelve weeks later. I really didn’t want to spend 12 weeks in hospital so I tried to strike a deal with my baby saying maybe we could split the difference and I could spend 6 weeks in hospital and he could come 6 weeks early (much safer than 12 weeks). However, James had other ideas and turned up the following day.
Even though I didn’t spend much time as an inpatient, I did end up going to the hospital every day for the next 75 days. I was really impressed with the support of The Neonatal Trust which pays for parents’ parking at the hospital. This is extremely helpful both financially, when I was in there 2–3 hours twice or three times a day every day for two and a half months and for time efficiency when your life is ruled by hospital visits, milk pumping and trying to keep a semblance of normality in your life.
While I was in labour the NICU staff sat us down and told us that the outcomes for babies born at 28 weeks were really good. They said it would be a long journey in the NICU but there’s a survival rate well over a 90%. I’ve worked in the health sector for over fifteen years and I think that made some parts of the journey easier, with high literacy about how the system works, but also some parts harder because I knew what the clinical staff were talking about when they were discussing quite serious health issues.
My partner Michael finds hospitals incredibly stressful, which in the NICU is heightened by the babies’ monitor alarms going off all the time. It doesn’t help that you’re in a windowless room for weeks on end. The rooms are kept like that because the babies are still supposed to be in the womb, but it’s a really unnatural environment for adults. One day, an alarm went off and about fifteen doctors and nurses appeared in thirty seconds. Even though it wasn’t for James, you realise that of course it is someone’s baby and that they are probably going through an awful time.
There was one time, about three weeks in when James got quite sick with an infection and the staff started saying things like, ‘don’t get worried unless I look worried’, which was meant to be reassuring but wasn’t at all. Compared to some of the stories I’ve heard in the NICU, we were very lucky. I began thinking about people that weren’t so lucky. How can someone lose a child and continue to function? How do you get the strength to keep going? I’ve overheard some doctors tells parents that their babies were very unwell. It’s utterly heartbreaking. With all these thoughts in my head, it was probably the worst week of my life. Luckily, James reacted really well to the antibiotics. He’s pretty tiny – only the second percentile weight – so he’s just got to put on pounds.
There’s a really special community in the NICU, a whole lot of solidarity. There were many occasions when mums comforted one another with hugs and cried together when someone’s baby had a bad day. It was hard to leave behind parents who had shared our 11 week journey when they had to remain with babies still needing NICU care.
The Neonatal Trust do a lot by just being there. The lovely ladies that run the Trust’s shop were there every morning. They’re sort of a combination of mums, counsellors, social workers and specialists in neonatal information. They’re such kind, supportive people and they can tell a day that you want to talk and a day that you don’t. They’re also kind of like the bouncers of the NICU. They’re situated right at the front doors where there’s a handwashing station which everyone who comes in has to use and lockers for bags and coats to keep the risk of infection down. A baby is only allowed one parent and one visitor at a time and the visiting hours are quite strict. One day, a group of tough looking guys showed up and one of the ladies, who’s tiny, was telling all of them where to go and making sure they washed their hands and I wondered how they’d take it. However, all these tough guys wanted to do was to see the newest baby in their family.
I’ve been involved with Kaibosh for a long time and currently am chair of the board. Kaibosh partners with a variety of Wellington charities supporting people with a wide range of needs. I never thought I'd be a recipient, but Ronald McDonald house and the parents' day room in the hospital receive food from Kaibosh (among others). This is a great support for NICU parents spending long days at the hospital, they can go and have a snack or a meal without the stress of shopping, cooking or the expense of café food. The circularity of paying it forward really is wonderful, you never know when you may be in need.
If I had to give advice to someone going through this, I would tell them that it is your own journey and don’t undervalue how hard it can be, even if others around you have smaller/sicker babies. Be kind to yourself, take it one step at a time and most importantly, remember that it’s ok to ask for help. That’s what makes The Neonatal Trust so special; they help so much without you even realising it. To me, that’s magic.
Story by Telford Mills. Images by Neil O’Styke.
The Neonatal Trust are often an unseen hand working tirelessly to make the neonatal experience that little bit easier for families. That might be through access to support material for worried mums and dads, a community to connect with, or helping provide neonatal units with the important equipment to help ease their journey. We’d love you to consider supporting them with a regular donation by clicking that oversized blue button below!