ANGUISH, HARDSHIP AND HEARTBREAK SEEN IN THE SHOW IS EXACTLY HOW I FELT WITH MY SON DOUGIE
A MUM whose son was born with PKU in the Call The Midwife era said so little was known then about treating the condition.
When Dougie parry was born in 1969 his family believed all was well after his negative PKU test.
But it was wrong. And for 22 months after his birth he remained untreated for the dangerous disorder.
Doctors even took him off his vital low-protein diet at six for 15 years – unaware how dangerous it could be.
Now aged 51, Dougie, of Reading, lives in a special care home unable to speak and with restricted movement due to PKU-exacerbated infections.
Mum of two Amy, 83, said the helplessness felt by the BBC One characters facing PKU triggered her memories. She said: “The anguish, hardship and heartbreak is exactly how we felt.
“Luckily the knowledge, diets, PKU food and treatments like Kuvan around now are so much better. But back then we fear damage was done to Dougie without us, or even doctors, knowing.
“Being taken off his low-protein diet did more harm as well as not being diagnosed [at first].”
Amy said Dougie had changed from being active and fun-loving before the decision was made regarding his food. She said: “He would suddenly fly into a big paddy or bang his head against the wall. No one seemed to have a remedy.” Dougie was taken off his diet as few doctors realised then it must be a strict regime for life.
And he returned to the diet at 21 after Amy read about the benefits. She added: “Care for PKU is far better now. “Hopefully. Call The Midwife will help with public awareness as well as showing how tough the PKU life was back then.”