Emma and Jack are parents to three-year-old Oscar. When Emma gave birth to Oscar, he was taken into NICU (Neonatal Intensive Care Unit), due to a hole in his lung. But Emma and Jack were told that Oscar would be fine, and that it would heal, and they could go home.
‘From our perspective, we thought Oscar was a normal baby. He was suffering from some wheezing and rashes – not completely unnormal baby things - so we took him to the GP.’
After initially being told Oscar was fine by the GP, they were referred to Southampton Hospital due to his wheezing. Doctors did an x-ray on his lungs and told Emma and Jack that his lungs were all okay, however they would need to be seen by the heart team that day.
‘Even at this point, I didn’t think it would be serious. I thought he might need some medication or an inhaler maybe. But I was not expecting what was to come.’
After the heart team did all their scans, the doctors told Emma and Jack that they would need to operate the next day. Oscar was diagnosed with a Coarctation of the Aorta, which is a narrowing of the aorta that makes it hard for blood to pass through the artery. Oscar’s arch also wasn’t formed correctly. He required immediate open-heart surgery.
‘Because we hadn’t known about his condition, Oscar’s heart had become really big to compensate to help get the blood through. This was pushing on his lungs, giving Oscar something called a Bronchomalacia – which was causing his wheezing.’
Although the surgery went well, Oscar had become increasingly weak as his heart had gotten so big, and so he had to remain in hospital for seven weeks.
‘When they tried to take him off the ventilator, he crashed, and so we ended up staying in hospital for a long time. We stayed in PICU (Paediatric Intensive Care Unit) for about five weeks. And then we were in the heart ward after that’
‘It was really hard being in the PICU for that long, because obviously we were worried about Oscar, but we would also see all the other awful things happening to children around us. That I really struggled with. Four children passed away while we were in there, literally in the beds next to us. I just really feel for those families.’
After becoming so used to always having a nurse with Oscar on the PICU ward, Emma described how difficult the transition was to the heart ward, where there wasn’t that constant supervision. This was even more scary when they were finally allowed to take Oscar home.
‘When we came home, it was another jump and suddenly it was just us again. But a lot scarier than when you bring them back from hospital and you believe they are all fit and healthy.’
Throughout the time Oscar was in hospital, Emma described the impact his diagnosis and surgery had on both her and Jack.
‘I’m good in a crisis, I’m quite good at rallying, and being positive about things. Whereas at the time, Jack needed more support. But I got to a point last January where it all just hit me, I couldn’t talk about it because I would just be in floods of tears. I wanted to be able to talk to Oscar about it, but I just couldn’t, I wasn’t in a good place. So, Jack and I kind of swapped. We’ve both had to be there for each other at different times. He was more wobbly at the time, and after a year it sort of hit me harder that this will be an ongoing thing for the rest of his life.’
‘The older he gets, he’s just such a dude! I feel more like how I want to feel about it now, where I can empower him to be proud of everything. But I was so emotional a year ago I wasn’t going to be able to guide him that way. I want him to be proud and not fearful of the world, or feeling like he should not talk about it because it will upset me or anything like that.’
Emma explained how during the time when Jack needed more support, he would have regular breaks from the hospital to see his mum or go for a run. He found this useful for his mental health and coping with the challenges of having a seriously ill child in hospital. Emma, on the other hand, found it more helpful for her mental health to be there with Oscar, so she didn’t feel like she was missing anything.
Despite Oscar’s ongoing medical needs, Emma is positive about her family’s future:
‘It’s not like our lives have massively changed. We’re still here, we’re still the three of us. We’ve still got our gorgeous boy who’s fantastic, it’s just the meditation three times a day, keeping an eye on him, making sure I’m on top of all the appointments – it’s just our new routine.’
‘I did struggle, back when I was not doing well last year, when other parents would complain about their child – saying things like “oh, the terrible twos!” and I would think, you’re just so lucky. You have a healthy kid. They’re screaming, shouting and crying because they’re healthy.’
Emma and Jack were referred to Rainbow Trust when Emma was struggling with her own mental health. After contacting the ward where Oscar was an inpatient to enquire about support for her own wellbeing, the family were referred to Rainbow Trust. Family Support Worker Cindy began supporting them a few months later. Cindy provides Emma with emotional support.
‘Cindy describes her support for me as having the friend you didn’t know you needed. When she said that at the start, I thought, I have lots of friends already! But 100% that is what she was to me.’
Emma explained that she felt she could really talk openly with Cindy not only because ‘she is so lovely’ but also because as a Family Support Worker, Cindy receives wellbeing support from Rainbow Trust herself. One of Emma’s main worries when talking to friends and family about her situation was that she didn’t want to pass her worries on to them. But knowing Cindy had support in this way meant Emma felt more comfortable sharing the hard stuff without the anxiety that she would be a burden.
‘Cindy came round every few weeks, and we’ve been gradually stretching it. I feel so much better from talking to her and listening to her ideas. Even simple things, like I couldn’t look at pictures of Oscar while he was in hospital, but Cindy has helped me to reflect differently on this time and now I can notice times of love within that challenging period. We get everything out that is worrying me, and it has been so useful.’
Emma explained how she wasn’t sure if her and Jack would still be together if it wasn’t for Cindy’s support.
‘I don’t know what would have happened if I hadn’t’ had Cindy’s support. I was just not being myself and that was really hard. I’m a better mum for seeing Cindy – we are having so much fun with Oscar now, rather than worrying and avoiding things.’
‘With a frog in my throat, I don’t know where I’d be without Cindy.’
Emma’s message to other families who need support would be to ‘100% get in touch with Rainbow Trust. They can always help, or even point you in the direction of the help you might need.’
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