Heart mum, Catherine, shares her emotional story of what it was like to spend Christmas in hospital with her son Rafe, after he had surgery for Tetralogy of Fallot (TOF):
I think this special time of year will now always have a slightly different meaning for us than it did before Rafe was born. His first Christmas was spent coming out of intensive care at Great Ormond Street Hospital, at only ten weeks old.
Although we knew Rafe was going to be born with Tetralogy of Fallot (TOF), nothing would quite prepare us for the reality of having a baby with congenital heart disease (CHD): the ups and downs, the curve balls, the fear, the love.
Rafe was stable at birth, but we expected to have surgery at six months old. However, at only seven weeks old, Rafe was hospitalised with bronchiolitis. Then, only one week after being discharged, we found ourselves in our local A&E again, because his skin had turned ashen and his oxygen levels were worryingly low. Whilst here, the nurses witnessed Rafe having a ‘tet spell’ (where a TOF baby’s oxygen drops dangerously low and can be fatal) and, within the hour, the paramedic transfer team were blue-lighting us to GOSH because of urgent concerns about his heart.
It was all such a shock – my mind was constantly flitting between worrying about Rafe, to worrying about my husband Jamie, to worrying about Harry, my two year old at the time, and how he would cope without me. That morning, I wasn’t even sure Rafe was that ill, but by the evening, we were in our own room on Bear Ward (where children with heart conditions are cared for). Rafe was strapped up to constantly-beeping machines, monitors and tubes, unable to feed himself and struggling to breathe. As party goers milled in and out of the nearby pubs, enjoying their Christmas parties, I wondered what the next few days had in store – little did I know I’d be there for nearly four weeks.
Although Rafe recovered from the bronchiolitis, he continued to have more tet spells, which were quite traumatic to watch, and he was booked in for emergency surgery.
On Christmas Eve, Rafe was discharged from ICU where he’d been knocked out for four days, and we moved back down to Bear Ward, where there was skeleton staff due to it being Christmas but also because of Covid. I wasn’t really allowed many visitors; it was very isolating and I did feel very alone during those weeks in hospital, but the post-surgery days (which happened to be 24th, 25th and 26th December!) were particularly tough. Rafe was screaming, vomiting, and not sleeping – all perfectly normal reactions to open heart surgery – but dealing with it was very difficult with no friends or family around and more urgent cases on the ward that needed to be prioritised.
Christmas Eve, Christmas Day and Boxing Day went by in a flash and I barely remember the details now, just the overwhelming sense of not knowing what I was doing! I was in a constant state of high adrenaline, worried about every, single, little thing. I’d lost weight, my jaw and cheekbones were agony, as I’d started unwittingly to grind my teeth, and I was having shooting pains across my chest. I was the least ‘chilled’ mother ever at that point and I’m pretty sure I did the nurses’ heads in!!
My heightened emotions and anxiety were exacerbated further by a consistent lack of sleep due to severe postpartum insomnia and fluctuating hormones, having only had a baby ten weeks prior. It was very intense to say the least and the most draining, challenging experience of my life – but I think I’ve come out stronger for it.
I desperately missed Harry of course, and whenever we spoke I was trying to put on a brave face and be ‘Happy Mummy’ . Although he visited GOSH, I hadn’t been home for around three weeks at this point, and it was clear he was confused, missing me, and just did not understand what was happening. Harry had even started telling me that he didn’t love me anymore which, although I understood where it was coming from, was pretty heart-wrenching!
Despite all of this, however, my memory of being in GOSH had some quite magical moments too. There’s a feeling in the air at GOSH which is hard to put into words: a feeling of all being in it together somehow, of going through your worst days on earth, while also being in the safest hands possible. You are at your most vulnerable, most scared – but everyone there is going through their own personal hell alongside you. The strength of emotion you feel for the nurses, the doctors, the surgeons, the anaesthetists, and many more, who pass through your life for such a fleeting moment, is quite incredible. The words ‘thank you for what you do’ don’t even cover it. When Rafe’s surgeon called me to say his surgery had been successful, I just about managed to restrain myself from telling him, this total stranger I’d only met that morning for about ten minutes, that I loved him from the bottom of my heart! But I really meant it! I still do.
Father Christmas and his elves visited us on Christmas Day, and even though Rafe was out for the count, they brought a lot of joy to the ward. I also received multiple boxes of unexpected Christmas gifts from warm-hearted strangers who’d given up their personal time to write cards and wrap presents of chocolate, teddies, and shampoo/toiletries. One gift was a hand-knitted baby blanket, which must have taken hours to produce, and another was a thoughtful note from a seven year old girl, which read, ‘There is always hope’. When I think about these things now, it still brings a tear to my eye. The pure kindness of these people is amazing and they’ll never even know how much it meant to me to feel that supported during that time.
We finally got discharged and came home on New Years Eve. We had a belated Christmas dinner at home, but we were all totally exhausted, emotionally and physically, and it was hard to really enjoy it. Jamie had had such a tough time too, effectively being a single parent, coping with a confused toddler who was acting up because of everything. We felt like we had the weight of the world on our shoulders.
Even though I should have been happy to be home, this was when everything that had happened really started to sink in. Over the next few months, my worry about my kids became next-level. This wasn’t unfounded, because at the time there were a lot of bugs around (one of which sent both my kids to A&E again, somewhere I thought I’d not be revisiting quite so soon and totally house-bound us for two weeks!) Looking back, I can see now that I had serious health anxiety. There were things that I was exposed to at GOSH, things other families were going through, that I wish I could un-hear, could un-see, and which will sadly haunt me forever. I found it impossible to relax, and was experiencing strange flashbacks and constantly dealing with intrusive thoughts about all the horrible things that might happen to my family. My insomnia was crippling, and I would break down in tears in the middle of the night and end up taking sleeping pills for nights on end.
Then, after about ten months of this, with things very slowly getting better, I woke up one day and realised I suddenly felt good again. It felt like it came out of nowhere. Time had passed, we weren’t dwelling on things so much anymore, we felt healthy, were getting some much-needed sleep and, for the first time in nearly a year, I felt positive again. I felt life was actually worth looking forward to! And it’s such a cliché, but it’s not until you feel good that you realise how bad you felt before.
So, as Christmas looms around the corner, this year we feel like we really do have reason to celebrate and are already getting ridiculously over excited! The tree has gone up already (as I write this, at the end of November!), and we have festive plans coming out of our ears including: Christmas parties, Santa’s grotto, making tree decorations, Christmas markets and icing a gingerbread house! And lots of mulled wine for the adults, of course!
This will be our first Christmas together as a family of four, and I feel so truly grateful to be home with the people I love. We will certainly be doing everything we can to make this year one to remember!
At the same time, my heart goes out to families who are going through what we went through last year. It is unbelievably tough, but I’m grateful every single day that Rafe’s TOF was spotted at the 20-week scan, meaning he got the right care, at the right time. The sonographer who spotted something was wrong literally saved his life (OK, well the surgeon and his team at GOSH had something to do with it too….)
There were plenty of other women on Bear Ward with me, who had only given birth days or weeks before, and had no idea their baby was so sick. They were rushed into GOSH when they started to show the red flags – they were beside themselves, shaking with fear, white as sheets, well aware they were on the back foot and that irreversible damage may have already been done. At least we’d had four months to get used to the idea that Rafe was going to have this condition. Still today, for some desperately sad cases, by the time the CHD is discovered, it is too late and nothing can be done.
It’s sobering to think that in the UK a baby is born with CHD every two hours and every year 1000 babies are sent home with an undetected heart condition.
A simple oxygen check could flag up any issues immediately but at the moment this is not part of the standard checks performed on newborns. WHY? Because of funds, or a lack of. Tiny Tickers raise funds to place oximeters in maternity units across the UK, as well as training sonographers to spot CHD in utero, and offer vital support to families of babies and young children with CHD, particularly through the difficult times of diagnoses and the surgeries.
Tiny Tickers is a charity and they need your help! You could literally save a child’s life by donating. So please, this Christmas, please donate what you can. Thank you.
Catherine has bravely shared Rafe’s story, from birth to surgery, in a series of three videos. Watch them here.