My girl Matilda had turned 18 months and I was worried.
‘She’s still not walking or talking,’ I said to my hubby Matthew, 36. She hadn’t put on any weight for six months, wasn’t meeting milestones and we’d seen a few odd behaviours.
‘Have you noticed how Tilly presses her head against the floor when she crawls?’ I asked.
Matthew had spotted it too, and we'd both seen how the veins on her head sometimes bulged.
When she also began vomiting up whatever she ate, I took her straight to the doctor, who ordered an MRI.
‘She has a very rare medical condition called Vein of Galen Malformation or VGM,’ he told us, explaining it occurs during pregnancy and results in abnormal connections between blood vessels in the brain.
To ensure her brain received enough blood, Matilda’s heart needed to work harder. ‘Without treatment, Tilly’s heart will fail,’ he added.
‘When?’ I gasped.
‘It could be two weeks or two years,’ he said.
We were distraught. Poor Tilly also had hydrocephalus – an enlargement of the brain cavities caused by a build-up of fluid. She was rushed in for a life-saving operation.
The surgeon told us he’d insert wire coils into her brain to stop further swelling. ‘There’s a 30 per cent chance she won’t survive surgery,’ we were warned. ‘There’s also the possibility she could have a stroke or develop cerebral palsy.’
But we didn’t have a choice, so we paced the hospital corridors until, finally, we heard it had gone well.
‘Thank you,’ I wept, filled with relief.
Tilly, who now has to be fed and given medication through a tube in her stomach, had more surgery in May. This time, surgeons closed off another vein causing the VGM to expand.
Now, at nearly two, Tilly is still the size of a one-year-old and has yet to start talking, so we are learning sign language with her.
Despite everything, she starts every day with a smile, for me, Matthew and her big brother, James, five.
We desperately want her to be operated on by Dr Darren Orbach, a surgeon in the US. He is meant to be the best in the world and has lots of experience treating children with Tilly’s condition.
However, when we realised we’d need a staggering $180,000 to fund the surgery, trip and ongoing treatment, we turned to the public for help.
So far we have been blown away to have received $60,000 and are making plans to take Tilly to Boston for surgery in October.
We’ll do everything we can for our beautiful brave girl.
To help get Tilly to Boston go to gofundme.com/gettillytoboston
What is VGM?
• The condition is often diagnosed in the womb or soon after birth.
• It is caused by abnormal connections between arteries and veins in
the brain.
• VGM can cause rapid head growth and heart failure in infancy.
• Treatment includes surgery on the abnormal veins, including blocking them.
