A high-risk procedure

Two-year-old Cody was born with severely malformed blood vessels deep inside his brain. Left untreated this very rare condition known as a Vein of Galen malformation, can cause heart failure and problems with blood supply to the brain at any time. For Cody, the condition could have caused him to lose his speech and mobility. 

Cody’s health visitor noticed his head was growing at an abnormal rate compared to the rest of his body at a regular health check six weeks after Cody was born, but there were no other visible signs to suggest anything out of the ordinary.

Health check shock 

It wasn’t until another routine check-up when Cody was nine months old that mum Luisa and dad Steve first realised something might be wrong. Further measurements of Cody’s head revealed it was in fact growing an average of 1cm per month, far more than what would typically be expected for a boy his age. This news came as a shock because as far as Luisa and Steve could see, Cody was developing well and hitting all his key milestones just like his two older siblings had.

Cody was sent to his local hospital for a CT scan while the family desperately waited for answers. A brain tumour was initially suspected by the doctors, before MRI scans finally revealed Cody actually had a Vein of Galen malformation. It was an uncertain and anxious time for the family, as Luisa explains: ‘Although we now had a diagnosis, it was for a condition we’d never heard of and we weren’t sure what this meant for Cody’.

Family holiday on hold

Cody was immediately referred to Great Ormond Street Hospital (GOSH) as soon as he received his diagnosis. With just 10 to 12 children in the UK diagnosed with vein of Galen malformations each year, only three doctors in the whole country are trained to treat the condition. Two of them are based at GOSH, including Cody’s interventional neuroradiologist Dr Adam Rennie.

Cody was admitted for an angiogram to carefully examine the arteries in his brain. The results showed he needed treatment soon and the family cancelled their planned holiday to Greece so Cody could be seen as quickly as possible. Treatment came in the form of an embolization procedure; Dr Rennie had to meticulously insert tiny metal coils into an artery in Cody’s leg and work them up all the way to his brain to block up the abnormal connections between vessels and arteries and correct the blood flow. However, this procedure carried its own grave risks as one small mistake could have torn the vessels. On average only 1 in 3 children emerge from vein of Galen treatment alive and free of any mental impairment.

A long wait for good news

It was a long five hours as Luisa and Steve anxiously waited for Cody’s procedure to finish. The initial signs were positive and after a few days recovering on Koala ward Cody was ready to be discharged home.

Luisa, Steve and Cody returned to GOSH a few months later and further scans confirmed that the procedure had been a complete success. The abnormal vessel connections had been blocked off, stopping the extra strain on Cody’s heart.

This news came as a huge relief to Luisa, she says “It’s amazing… I’ve spent months crying with fear and now I just want to cry again!”

Cody’s head is now growing at the same rate as the rest of his body and he doesn’t need to come back to GOSH for another check-up until next year. He will start toddler group in April and in the meantime is enjoying playing with his siblings and watching Paddington Bear and Fireman Sam.

Medical Conditions