75 years of living with a congenital heart condition

Being diagnosed as a baby

“My mother used to watch over me like a tigress with her cub. She called me her blue baby. My skin was quite blue, possibly from low oxygen levels,” recalls Daphne Smewing, who was born in 1946.

They said there was nothing to be done at that time, so I probably wouldn’t live long

When Daphne was three months old, the GP told her parents she had congenital heart disease. Her mother fought for her to get more tests, and when she was three, her parents were told that she had a hole in her heart and a problem with her pulmonary valve, which controls the flow of blood from the heart to the lungs.

“The NHS had only been created the year before, in 1948. They said there was nothing to be done at that time, so I probably wouldn’t live long.”

Daphne remembers her childhood as one of certain restrictions. “My mother always said, ‘Remember your bad heart.’ I couldn’t do a lot of things children did. I had to be very careful about running because I would become so blue and breathless.”

Life-changing surgery

Her life changed for the better when she was 10, after she had a valvotomy, a type of surgery to expand her narrowed pulmonary valve. As this type of surgery was only just starting in the 1950s, Daphne faced a long recovery. “I spent about a week in an oxygen tent, which was a horrible experience.”

Soon I was doing all the normal things teenagers do

After four weeks in hospital, it was as if she was starting a whole new life. “I’d still get a bit breathless if I ran too much, but in comparison to how I was, I could do everything. Soon I was a teenager in the 1960s doing all the normal things teenagers do, wearing miniskirts, going to dances. It was fantastic.” 

Marriage and children

At one of those dances she met her first husband and got married in 1968. They had a daughter, Jennie, in 1975, who was also born with a hole in the heart and a problem with her pulmonary valve.

“When she was born I asked if this was hereditary. They didn’t know. We never had other children as I didn’t want to put any more children through what my brother, Charles, went through when I was in and out of hospital. But we did become foster parents,” says Daphne.

Nowadays the BHF is funding research into why some congenital conditions seem to run in families. Fortunately Daphne’s daughter, Jennie, has led a normal life after having her pulmonary valve repaired when she was three. “I let her do things a normal child would, I didn’t want to wrap her in cotton wool like I’d been,” says Daphne.

Jennie has gone on to have five children, none of whom have heart conditions. Daphne herself enjoyed a normal life until her late 50s, when she started experiencing breathlessness again and noticed her heart beating in a strange way. She was very busy as a social worker, chairing child protection conferences, and at first put her symptoms down to stress.

Long hours in hospital

But soon Daphne was feeling ill and was in and out of hospital in what felt like a “revolving door”. She now knows that she had atrial fibrillation, the most common type of heart rhythm problem. From 2005 to 2006, she had numerous procedures, including an unsuccessful cardioversion and three ablations, before having a pacemaker fitted. She stopped feeling palpitations but was still struggling with breathlessness and low oxygen levels.

“It was a horrendous time,” recalls Daphne. “I was still working part-time and I think people thought, ‘Oh God, she’s going to drop dead.’ I was going very blue.”
She says it was particularly worrying for her husband Clive, who she married in 1999 (having divorced her first husband in the 1980s). “When I think about all the hours Clive spent in hospital with me, I’m so grateful for his support.”

Being able to walk without gasping for breath every step was wonderful

Eventually she got referred to the congenital heart disease unit at the Queen Elizabeth Hospital in Birmingham. She had an initial consultation in October 2006. But before she could have a follow-up appointment, she was rushed by ambulance to her local hospital on Boxing Day, before being transferred to the Queen Elizabeth. There, she was offered emergency surgery but told there was a significant chance she could die on the operating table because she was so ill.

“I thought, I’ve got no life as it is now. I can’t work, I can’t play with my grandchildren. I’m willing to take that risk,” says Daphne.

The surgeon repaired the hole in Daphne’s heart and replaced her pulmonary valve and her tricuspid valve. Her recovery was slow. She had to stay in hospital for eight weeks, after picking up an infection after the operation. But on leaving hospital she felt “fantastic”.

“Being able to walk without gasping for breath every step was wonderful,” says Daphne. Before returning to work she took a celebratory trip in her caravan to Dorset where she was happy to walk the rolling hills with her dogs and husband Clive.

Wearing scars with pride

These days, Daphne isn’t as mobile. She’s waiting to have a hip replacement and she began experiencing some breathlessness again seven years ago. But her breathlessness isn’t as bad as before and she doesn’t experience it every day.

• Get tips for managing shortness of breath

I wear these battle scars with pride. I’ve been through a lot to get these

“I’ve learned to pace myself and take life a day at a time,” says Daphne. “If I’m having a bad day, I take it easy. If we’re walking in town, I sometimes have to stop to catch my breath and I’ll look in shop windows while I rest.” Daphne’s medical troubles have left their mark, but she doesn’t see the experience as all negative.“

After the two operations – one in my childhood, one more recently – I’ve been left with scars across and down my chest, like a hot cross bun. But I wear these battle scars with pride. I’ve been through a lot to get these.”

Appreciating every day

“Going through this has changed me,” she adds. “I’ve learned to get less angry, to worry less, and appreciate the support of my family, friends and work colleagues. I now understand that every day is precious.”

Since retiring, Daphne keeps herself busy by leading local University of the Third Age literature and discussion groups. Her husband bought her an electric mobility scooter so she can join him on walks, and she loves driving her red two-seater sports car to see friends. “I still live life to the full,” says Daphne. “Not bad for an ‘oldie’ that, back in 1946, wasn’t expected to live. 

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