Hi, I’m Rebecca and mum to Mike, now age four.
Michael is my second child and was born in March 2012. From the moment I went in to labour it was clear there was something up. By the time he was three days old, Michael had been diagnosed with Congenital CMV.
CMV is a usually harmless cold virus, unless you catch it for the first time in pregnancy, like me. A first infection can harm the developing baby and is one of the biggest causes of childhood disability. Michael was one of the small numbers of babies born symptomatic in the UK, every year. When he was a few days old, we were given the news that Congenital CMV would most likely cause Michael some problems with development and health.
Mike’s life has never been normal from the neonatal unit, to chemotherapy drugs, to sensory sensitivities, to developmental delay, to NG tube feeding and an infant feeding disorder. As his mum, I’ve had to jump from one specialist to another and have become expert in the health and development of my little boy: trusting in that though, hasn’t always been easy.
I remember ringing the health visitor when Mike was about to turn six months. He showed no obvious signs for weaning. At six months though, the advice is babies need weaning, so we went ahead. It was obvious to me, the first time I attempted baby rice; things were a bit different.
Offering Mike food was like opening a big can of worms! He suddenly became a baby who cried uncontrollably day and night. He would wretch at smells, scream at sights and no matter how hard I tried he wouldn’t take the food in his mouth. Every professional I approached told me that he was taking time to adjust. I knew it was so much more than that but nobody listened.
Time went on and on, and the lack of nutrition left Michael underweight and failing to thrive. He didn’t eat, didn’t sleep but had boundless energy and we were really struggling. Test after test revealed no medical complaint and eventually (once professionals were prepared to admit it) we concluded we had a big problem, how were we going to nourish this little boy?
Doctors were concerned tube feeding Michael would result in a tube dependent child, but had no other suggestions. While I was desperate for him to be nourished, whatever it took. Mike was painfully thin and unhappy. I reported over and over again that he was banging his head often and shrieking day and night. Still doctors didn’t know how to act, so Mike was left hungry.
It was in April 2013, after our second appointment with Michael’s speech and language therapist, Rebecca Howarth, that she suggested I research in to the work of, Terry Dovey and Clarissa Martin. I did and rang them immediately.
Terry knew exactly what was happening to Mike and he could explain the behaviour and understand what we were going through. I knew in that instant, I had to get Mike to them. Little did I know the struggles we’d have to go through to get there though!
The NHS doesn’t have resources like Clarissa&Terry and you’d like to think Michael’s problem is specialist, but the reality is lots of kids are being tube fed far longer than they need to be, or even left hungry (as hard as that is to believe). Professionals just don’t have the time or knowledge required and the reality is, parents need support to teach their children to eat.
When I say Michael didn’t eat, by process of elimination we’d discovered snacks he would nibble, like a mouse on and after an eight month struggle from breast to bottle, age 14 months, he would drink 160mls of prescription formula milk on a good day. Most days he would take nothing or would projectile vomit, anything he did eat.
We were in and out of hospital with dehydration.
Age 23 months never eaten a meal or taken anywhere near enough prescription milk and from July 2013 and February 2014, his growth had completely stalled. It was at this point he caught a stomach bug and we had no option but to tube feed.
As Clarissa’s programme isn’t part of the NHS, her work for Mike had to be commissioned through our local CCG. It took a long time to get the funding and Michael ended up tube fed (against my wishes but out of necessity) in the process. We were very fortunate to get the backing of my local Liberal Democrat MP at the time, John Leech who fought for us, in our darkest hours to secure this treatment for our son.
Now age four, Mike’s eating behaviour is developing all the time. Having finally got our referral to a Sensory Occupational Therapist, we now understand his complex sensitivities and his ‘sensory diet’, has had a huge impact on his overall happiness. Through this treatment with Clarissa, we’ve completely transformed his brain and he’s not only learned to tolerate food, but he soon began to walk (just before his third birthday) and talk, not long after that.
He is thriving in a mainstream school, with support.
This blog is a celebration of fighting through the trauma, to eventually have my little boy’s eating disorder treated with the dignity and respect, it ought to be.