Henny Beaumont's graphic novel Hole in the Heart recounts journey of daughter's Down's Syndrome diagnosis
PUBLISHED: 11:23 22 June 2016 | UPDATED: 11:34 22 June 2016
Stokey mum Henny Beaumont was 'shocked' when her daughter was born with Down's Syndrome - an experience she has now turned into a novel.
When artist Henny Beaumont’s third child was unexpectedly born with Down’s Syndrome, she felt as though her world had ended – and admits it took some time before she could learn to love the daughter she initially resented.
Her powerful memoir, graphic novel Hole in the Heart, charts her journey from Beth’s birth on Mother’s Day in 2001, through the worst she felt, and up to the point where “what I feared was nothing to be feared”.
But Henny, 49, from Stoke Newington, insists her honesty is not brave.
She said: “It’s a common feeling and should be spelt out more, and the danger of it not being spelt out is that you feel terribly guilty.
“That’s a dangerous thing for parents to feel because you don’t know what to do with that feeling – if someone can say it for you and make you feel it’s a natural process, that’s really helpful.”
Feeling there was nothing else around that described her story, and wanting to help others, she embarked on three “absolutely exhausting” years, over the course of which she put together her unique book.
It conveys the emotions Henny experienced, through drawings, coupled with thought and speech bubbles.
Beth had seemed no different during her first few hours alive from Henny’s other daughters, then aged three and five.
But then the registrar told Henny and her husband that Beth had a 50 per cent chance of having Down’s Syndrome – a genetic disorder typically associated with physical growth delays, characteristic facial features, and mild to moderate intellectual disability.
Henny worried how she would be able to look after her baby, who was very weak, and manage her other two children at the same time.
She said: “We were left with this awful statistic.
“In the book I was trying to explain my own absolute fear of what that meant – and it was to do with my own ignorance and prejudice, which I was completely unaware of until I was in that situation.
“When we had the confirmation I literally felt as though that was the end of the world or the end of my family life, and I went into depression.
“I thought before I had Beth that I was completely fine about Down’s Syndrome and I had no prejudice against anyone with any disability – but when it was someone in my family I realised I was horrified by the idea.”
Henny’s other daughters are now 20 and 18 while her son is 11.
Beth, now 15, had to undergo an operation at Great Ormond Street Hospital as a baby because she had two holes in her heart and a faulty valve. Henny documents how their family doctor told them they “might be relieved” to know Beth could die before them as it would lessen their burden as carers.
And she painfully recalls how it felt to break the news to others that her baby was disabled.
“I wanted to make that very clear to other people that it’s only when you live with something that you understand it,” she said.
Robert Yates, a consultant cardiologist at GOSH, has described the book as “essential reading” for every paediatrician in training, saying it made him feel “embarrassed for how we break this kind of news to you”.
Henny hopes the novel will help not only with those who have gone through a similar experience and the medical professionals involved, but also the wider public who may have wondered how to behave towards families with disabled children.
“Initially I really felt like I couldn’t love Beth because I found Down’s Syndrome so horrifying,” she admitted.
“But I want to show in the book what we are experiencing is normal family life.
“There are difficulties, but there are difficulties with all children.
“I do get to love her and I am in a place where I love all my kids differently and equally. They are all a pain in the neck at some points, and they are all lovely, too.”