When none of the regular treatments worked, Simone’s boy was given an unusual alternative.
Here, Simone, 33, tells the story in her own words.
C￼rying and awake all night with the pain, my boy tossed around his hospital bed as I held his hand. Realising Darcey needed yet another nappy change, I sighed and reached for my bag to clean him up for the tenth time that day. ‘It’s okay,’ I told Darcey, knowing that it really wasn’t.
Only two years old, he’d had a miserable start to life. Unsettled from day one, he contracted every bug going, even things like rotavirus and measles, which he’d been vaccinated against. We eventually discovered that he had an immune deficiency, but unknown to us at the time, treating every infection with antibiotics meant a much worse problem was developing. ‘He has a nasty gut infection called Clostridium difficile, or C. diff,’ a specialist explained when Darcey was eight months old. Usually brought on by too much antibiotic use, it causes major abdominal pain and extreme diarrhoea. Darcey had diarrhoea 10 to 15 times a day and he always had tummy pain. Initially it seemed like there was an easy fix and another type of antibiotics would kill it off.
Over 18 months, Darcey had 10 rounds of the medication and we fell into a cycle. He’d be fine on it for two weeks and the minute the course finished, he’d be back to square one.‘The drugs aren’t working,’ the doctors told me and my husband, Ben, 33. ‘We have to try a stronger one.’ Designed for intravenous use, we had to get Darcey to take it orally. ‘No,’ he’d say clamping his mouth shut, as we cajoled and persuaded. We tried five rounds of this. And it still didn’t work. Every day I was changing up to 15 bloody, mucus-filled nappies. Poor Darcey would have his knees up to his chin crying in pain. On top of this, he couldn’t eat because he had serious allergies and intolerances. ‘He’s living on special formula,’ I explained to people who saw him still drinking from a bottle at two. His gut couldn’t cope with anything more than that. We felt utterly helpless.
Every day Ben and I hoped things would improve or there’d be a new drug to try. So when, in November 2013, we met with all his specialists, we were in for an enormous shock. ‘There’s nothing more we can do. All conventional medical treatment has failed,’ they explained. ‘We can give pain relief, but we can’t get rid of the underlying problem.’ Without treatment Darcey’s future was bleak. He would most likely develop sepsis and could die. I was completely devastated for our little boy. Then Darcey’s immunologist got involved and offered him a lifeline. ‘I think a faecal microbial transplant could be a viable option,’ she told us. Good flora from the faeces of a healthy person could be transplanted into Darcey’s gut to help rebalance it and fight the C. diff. It was pretty left field and had never been done on a child in Australia before, but after spending the night researching, I was sold. Both Ben and I were then tested to see if our faeces was a good match for Darcey. Ben’s came back as positive. His poo was going to save our boy!
In April 2014, Darcey was taken into surgery for the 40-minute procedure, which would place some of Ben’s faeces into his small intestine. The treatment was so experimental, nobody could predict if it would even work. But a few hours after the op, Darcey still hadn’t had any diarrhoea. ‘This is odd,’ I said to Ben, used to changing three or four nappies in that time. Twelve hours later, and for the first time in his life, Darcey told me he needed to do a poo. Even better, he did his first ever normal one! ‘It’s a crazy thing to be so excited about,’ I laughed. And from there he went from strength to strength. Even the doctors were amazed at the instant and complete recovery. The diarrhoea was gone and his stomach pain disappeared completely.
The next day he was well enough to go to the zoo. We’d never been able to do a day trip like that before! Over the coming months there was an even more incredible side effect. ‘He can eat dairy,’ I told Ben excitedly. In fact, all of Darcey’s allergies and intolerances were suddenly gone. ‘We don’t know how this has worked,’ the doctors said, amazed. It was an unexpected byproduct of Darcey’s treatment, but we certainly weren’t complaining. Ben’s poo had transformed Darcey from a sick little boy into a normal, healthy toddler.
Now six, Darcey has just started school. He still has an immune deficiency, but it’s much better than it was. Thankfully his sister, Pippa, now two, was born without any of the same complications. I still can’t believe what cured Darcey. Who knew poo could save a life!
Read more in this week's issue of that's life!