Pregnancy when you have congenital heart disease: Rachel's story

Rachel Adam-Smith, 38, from Boston Spa, West Yorkshire

Rachel Adam-Smith was born with a congenital heart defect. She tells Sarah Brealey about the problems she had when she fell pregnant, and life now with her daughter Francesca.

Rachel Adam-Smith, 38, from Boston Spa, West Yorkshire, was born with transposition of the great arteries (TGA), a congenital condition where the main blood vessels leaving the heart are the wrong way round.

Rachel had surgery to correct her condition at 10 months old. Heart surgery in infancy can make you prone to arrhythmias. Since her teenage years, Rachel has had a fast, often irregular, heartbeat, treated with beta blockers. Aged 24, she had a cardioversion to resolve it.

In the past, women like Rachel rarely lived long enough to become pregnant. “Now, thousands of women with congenital heart disease have been able to have children, with careful monitoring and care,” explains Dr Thorne. “If you have congenital heart disease, talk to your consultant. I would test the function of their heart beforehand with an exercise test, and see them in a joint clinic with an obstetrician and a nurse specialist.”

When she fell pregnant, Rachel had scans every two weeks. “I did well until 32 weeks, then one morning my heart rate went up to 200 bpm,” she says. “I had another cardioversion, then went into heart failure. I was kept in hospital until they decided to deliver.”

You learn to appreciate life more, and it’s made me determined to do all I possibly can for my daughter

At 36 weeks, doctors decided to deliver Rachel’s daughter by caesarean. “Francesca needed to be resuscitated,” Rachel says. “I was just coming round from the general anaesthetic when she was taken to special care and put on a ventilator. I wasn’t allowed out of bed to see her for the first day, which was difficult.”

After a few days, Rachel left hospital, though she was still recovering. Francesca remained in the special care unit for three weeks; Rachel visited every day. Francesca was then in and out of hospital for her first five years. Rachel had just had a pacemaker fitted when

Francesca became critically ill with pneumonia, septicaemia and renal failure aged 12 months. “Coping with a poorly child when you’re not well yourself is difficult,” says Rachel. “The nurses were worried about me and kept asking me to rest. But I stayed by my daughter’s bed all night. You find this inner strength when you go through something like this. I was going to be there for my precious daughter.”

Francesca, now 12, has been diagnosed with a chromosomal disorder and needs care for most aspects of daily life. “She’ll never be independent and that’s my biggest concern with my own health problems,” says Rachel. She’s brought up Francesca on her own since 2007, but says her mum has been “a rock”.

Rachel is now on her second pacemaker. She says: “You learn to appreciate life more, and it’s made me determined to do all I possibly can for my daughter.”

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