When our son Finley was born in April last year, he had a birthmark covering much of his body. Other than that, he was a perfectly normal, healthy baby boy, and the doctors soon sent us home. And for the next few months, everything was fine.
But at the age of six months, Finley suddenly became very irritable, crying all the time and not feeding well – he wasn’t his usual self at all. We took him to our local hospital in Gorleston, who told us he probably just had a virus, and sent us home. Over the next couple of weeks his condition didn’t improve, and we were back and forth repeatedly from the hospital. The doctors did all sorts of tests, and could find nothing wrong.
Suddenly, one of his eyes swelled. The next day it had doubled in size, and this time when we took him into the hospital, the doctors took him immediately for a scan. Late on Friday evening we got some shocking news. The doctor came in and told us that they had found a growth in Finley’s head – they described it like an octopus – snaking from his neck all the way up inside his head behind his eye – this was what had caused the swelling.
Finley needed to be transferred immediately, and he was rushed by an ambulance to Addenbrooke’s in Cambridge, almost two hours from our home in Bradwell.
We arrived in the middle of the night, and were immediately met by a team of doctors from a range of specialisms. Eventually, an oncologist came in, and our hearts sank. He told us they needed to ascertain if the growth was cancerous.
As we waited for the results of their tests, Finley was in terrible pain, and very distressed, so it was vital we could be there by his side. For the first couple of nights we tried to get some sleep in the emergency accommodation at the hospital, but we were in bits, we didn’t know if we were coming or going. We were nearly a hundred miles from home, and so worried about Finley. We needed to be there for him.
It was at this point that we met Sandra, the House Manager at Acorn House. She came over to the ward, explained what The Sick Children’s Trust did, that it was a charity set up to support parents like us, and took us over to Acorn House, where she sat with us and we talked over a cup of tea.
When you’re at a hospital miles away from home, having heard some of the most awful news you can ever hear, kindness like Sandra’s meant so much.
At Acorn House we had our own bedroom, which was lovely and clean as well as comfortable and homely. It was nice that we had our own privacy after being on the ward all day where you’re never by yourself. We also spent time in the communal areas at Acorn House, taking turns to stay with Finley while the other one would go over to the house and have something to eat in the kitchen or sit in the lounge and watch a bit of TV, just to try and relax a little.
The most important thing about being able to stay in the ‘Home from Home’ was that we could be back by Finley’s side within a couple of minutes if we were needed. Being close by was so important – when your child is in pain, seconds are so vital and you don’t want to waste any time.
The house also gave us the chance to chat to other families in similar situations. We met one family who lived quite close to us, and their child was on the same ward, and it was really good to talk to them. We found it helped to put us more at ease, and talking about normal things helped us to take our minds off what was happening to us and to Finley.
After a week at Addenbrooke’s, we met with a neurosurgeon, who told us they would like to do a craniotomy to explore the growth. The doctors sent us home for the weekend, to have a bit of normal family time at home with Finley, before we came back for his surgery. It was so comforting knowing that our room in Acorn House was waiting for us.
The neuro-surgery went well and the news was a relief. The growth wasn’t cancerous. Instead, it was an internal haemangioma – the birthmark that covered much of Finley’s body had also grown inside his head, a massive tangle of arteries and veins that was pressing against his brain and his eye. He was put on medication to shrink the growth and we came home. For six weeks, all was well.
On Christmas Eve, things took a turn for the worse. Finley’s symptoms returned and I took him to the local hospital, who once again told us it was likely a virus and sent us home. I’ll never forget that Christmas Day. I woke up and he was screaming in pain. His temperature read 40.2 degrees and as I called for a doctor he suddenly started having a febrile seizure. We rushed him to the hospital where his seizures continued. At one point he was having a convulsive seizure for over four hours, and none of the medication worked. They couldn’t stop it and there was nothing we could do as parents to give him comfort.
Finley was diagnosed with meningitis and septicaemia and needed to be transferred to Addenbrooke’s again. Once again, we were able to stay at Acorn House and be by Finley’s side. He was still having seizures, and had another craniotomy, but eventually his condition stabilised and he was able to come home with IV antibiotics.
Because Finley was on so much medication, it was important for the hospital to monitor the rest of his body. It was during these routine tests that they discovered he had a heart defect. This was completely unrelated to his haemangioma, but it was only because of the haemangioma that it was discovered. So in May we made another long journey down from our home in Bradwell to Great Ormond Street Hospital in London, where Finley underwent open heart surgery.
The Sick Children’s Trust was again our saviour. The doctors told us that Finley would probably be in hospital for several weeks recovering from his surgery, and we knew there was no way we could afford hotel accommodation in London for that long. Thankfully Rainbow House was to become our home. We met Sam, who took us to the house, just a few minutes’ walk away in the centre of London.
Both we and the doctors were amazed when Finley made a remarkably quick recovery, and we were home within a week. Without a doubt the fact that we were close by was very important for Finley, and played a vital role in helping him to recover so quickly from his surgery.
He’s still on medication for his heart, and will need an MRI in the next couple of months to see if his haemangioma is shrinking as it should. We’re in Cambridge regularly for his check-ups, and when we’re there we always pop in to see Sandra at Acorn House. It’s lovely to be able to go and chat to her in that relaxed environment, and show her how Finley is doing.
We’re just so grateful for the support of The Sick Children’s Trust during what was a very difficult time for us all – we can’t thank them enough.
Lizzie McKay, mum to Finley