Why were Sylvia Nyamaah, 32, from London, and her baby banned from using public transport?

Fact file

Counting 20 fingers and toes, I beamed with pride. It was 21 June 2015, and I’d just given birth to twins – Amelia and Malachi – at Whipps Cross University Hospital.

‘They look just like you,’ my partner Walter, now 37, smiled.

I knew their older siblings, Isaiah, now nine, and Sapphire, eight, would adore them, too.

But a checkup a few weeks later changed our lives forever.

‘There’s something on Malachi’s brain,’ a doctor told me after doing a scan.

Sent for further testing at London’s Great Ormond Street Hospital, I was a nervous wreck.

What was on my babyõs brain? After hours of tests, we finally had an answer.

‘Malachi has Vein of Galen Malformation,’ a specialist said.

He explained that VGM was a rare condition which occurs during pregnancy – it meant there were abnormal connections between Malachi’s blood vessels in his brain.

Blood was being taken away from his organs and into his brain, putting pressure on his head.

And, because blood was being taken away from it, it meant his heart was having to work overtime.

As for my heart, it broke in two hearing these words.

‘My poor baby,’ I cried. ‘What can we do?’

The first step was surgery, which Malachi had that October.

Surgeons worked to block off blood vessels using special ‘glue’, so that blood flow through these vessels could be reduced.

But there were complications.

While the pressure on his brain had been reduced, Malachi had severe brain damage, his vision had been impaired, and he could no longer swallow.

After that, though, there was nothing more doctors could do. We were sent home to take care of him on our own.

As he grew, Malachi was unable to sit up or control his own head, and had to be hooked up to a machine three times a day to pump milk into his stomach through a tube.

He struggled to clear his own airways and had to be supported at all times.

If not, secretions would build up in his throat that would cause him to projectile vomit. It broke my heart, especially as his twin sister met all

her milestones without him.

‘He should be doing that, too,’ I said sadly.

The most difficult part was taking him anywhere.

As I don’t drive, I had to take the kids to school on a bus, and with Walter at work, I had no choice but to bring Malachi with us. Every journey was a nightmare. Unable to support his head, his airways would become blocked and he would vomit.

Eventually, we were banned from using public transport, so I had to rely on taxis.

But that didn’t solve the problem – each time we went to school, Malachi would vomit in the car.

One morning in February 2018,

Surgery hadn’t gone to plan

Vein of Galen Malformation (VGM) affects one in one million children born in the UK each year. It is a rare condition which occurs during pregnancy and results in abnormal connections between blood vessels within the brain. VGM can cause pressure on the brain, prominent veins on the face, and dark circles under the eyes. The heart may also be affected by the increased workload and become enlarged. If untreated, this may lead to heart failure.

Visit www.gosh.nhs.uk.