As you know, most people associate osteopathic treatment with bad backs or a dodgy hip.  However, when my boys were babies, I discovered just how effective osteopathic treatment was for early problems such as ear infections.


Baby Toby

But when my second son turned out to have been born with an incurable kidney cancer (mesoblastic nephroma with chondroblastic differentiation, they decided to call it) we went on a journey that no new mother could ever had dreamt of.

Great Ormond Street Hospital told us there was no protocol to treat this.  They made one up with some pretty nasty concoctions which they pumped into my precious baby.  Then they topped it off with seven weeks of daily radiotherapy under general anaesthetic.  After the two major abdominal operations to remove his kidney and subsequent further tumour, I took him for some cranial osteopathy.  He bounced back well.

But the chemo was so toxic that Toby developed other conditions including non-absorption of calcium leading to brittle and broken bones.  He also developed a blood clotting problem (Acquired Factor II deficiency) and once he gave up breast feeding at 13 months he had to be fed via nasogastric tube.  Even getting a jelly tot or two into him was an art!

But Toby had a slightly older brother, Max, to look up to and emulate.  Pushing himself to climb up to the top of the playground slide after his brother was indicative of his innate determination to survive.  And whilst I protected Toby, I never wrapped him in cotton wool!

However, I wish I had known that a couple of osteopathic treatments could have helped Toby after the chemotherapy had ravaged his tiny body and left him emaciated and weak.

With a lot of time and many setbacks, Toby finally improved.  Gradually we could relax back into a life without endless hospital stays, febrile neutropenia bouts, Hickman line management and him falling off the bottom of the centile line growth chart.

I threw an enormous garden party to celebrate Toby reaching 2 years old – it was a very emotional day as he was still not out of the woods.

When he was just six and Max was seven we moved to Athens, Greece where he flourished in the sunshine.  His medical history terrified the British Embassy School, but he merrily swung from the climbing apparatus and scooted up the olive trees – to their absolute horror!  He cart-wheeled around the flat’s marble floors and swam in the pool like a dolphin, spending ridiculous amounts of time under water.

After having turned 12, Toby became ill with Parvo virus and struggled to recover from it.  One night I saw his highly swollen legs and how he seemed to be suddenly slipping away.  My gut instinct took him immediately to A&E.

Very quickly they identified serious heart failure and we were whisked to ICU in the Onassis Heart Hospital.  Eventually, it was deduced that he had Anthracycline induced dilated cardiomyopathy and the Parvo virus had exacerbated it.  A large blood clot in his heart was identified and a week later it caused a left middle cerebral artery stroke, leaving him paralysed and virtually speechless.

After two months, Toby was walking and talking again but the right side hemiplegia had left him with distonia and a hand which would not cooperate at all.

Many tests were done and after one invasive biopsy, a Greek nurse slapped a little sample pot into my hand and told me to take it to a specialist clinic on the other side of Athens for testing.  Holding a piece of your precious child’s heart in your hand is something that no parent could ever anticipate!


Toby’s 13th birthday

The news came that Toby needed an urgent heart transplant and I was devastated.  There is no programme for heart transplants for children in Greece.  From the back of the hospital I got on my primitive mobile phone and begged GOSH to take Toby back and save him.

So once back in the UK, I reconnected with my Osteo friend Anne Wright and it just seemed obvious to give him regular osteopathic treatments to help his body to heal after all the trauma.

Gradually Toby responded and grew stronger.  Meantime the cocktail of drugs which GOSH had prescribed was supporting his heart and the viral damage repaired.  Amazingly, Toby began to cycle to school and achieved great results in his GCSEs.  Halfway through his BTEC in Performing Arts however, he collapsed.  It was time to go on the transplant list.

Yet again cranial osteopathy improved his condition from lethargic and exhausted to animated and vibrant.  Even I was shocked at the change in him.  While he waited for a new heart, every day he took two buses to college and back without a whimper.

Toby's 18th

Toby’s 18th birthday

At one year post heart transplant, I threw another garden party for Toby – this time to celebrate the miracle of his 18th birthday.  Despite suffering with Epstein Bar Virus, he managed to shine as much as the sun and embraced all his unexpected guests with gusto!

Afterwards Max threw a further surprise party at a local bar and filled the place with teenagers – and me!

Toby is now 20 years old, has a steady girlfriend and recently moved out into a super little flat. He has an accountancy job which he really loves and an amazing boss who is thoroughly supportive. Meanwhile in his spare time he is studying to be an Accountant.

He is happy, fully fledged and I think my work here is done!