Lorraine Stone was born with heart disease. When just three days old she was the youngest person in the world at that time to survive a heart by-pass operation. Since then she has had five major heart operations. Miraculously, at the age 29, she is expecting to give birth to her second child in July.
Lorraine said: "When I was 16 my mum asked my consultant if it would be safe for me to have babies. For many women with congenital heart disease their heart is not strong enough to carry a pregnancy for nine months. I was told they would never know if it would be possible for me to have children. The fact that I am now expecting my second child shows the advances that have been made in treatment and care."
University College London Hospitals NHS Trust is providing hope for thousands of women across the country born with heart disease who want to have children. In the last 18 months 110 pregnancies involving women with heart disease have been managed by the specialist team at the Elizabeth Garrett Anderson Hospital.
Advances in surgery and medicine means that about 90% of those born with congenital heart disease can now expect to survive into adulthood and lead relatively normal lives. However, until more recent years many women were advised not to become pregnant due to fears about the impact this would have on their own health.
Dr Fiona Walker, a consultant cardiologist, Specialising in the care of adults with congenital heart disease at the Grown-up Congenital Heart unit (GUCH) at the Heart Hospital said: "UCLH started a GUCH service because so many people born with heart disease are surviving into adulthood. Congenital heart disease means people may be born with holes in their heart or with missing heart valve or vessels. Adult Survivors will often have had multiple heart surgeries and may require further surgeries or catheter interventions over the course of their lifetime. There are now between 16 and 20 thousand adults living in the UK with congenital heart disease. It is a tribute to paediatric cardiac surgeons and paediatric cardiologists that this figure is so high".
"We started the GUCH service at UCLH to provide a continuum of care for patients who were previously treated as children and adolescents at Great Ormond Street, but also provide care for patients referred form around the UK. UCLH is one of only three specialist units in the country.
"For many women the desire to have children is very strong and women with heart disease are no different.. In the past it was devastating for these women to be told that it is was not safe for them to conceive and give birth. Thanks to advances in medicine and our understanding of the impact of pregnancy on heart disease about 80% of women with congenital heart disease can now consider having a baby. It means pregnancy and childbirth becomes a science not an art but I it also means that women who were previously advised not to have babies have had successful pregnancies.
For many of these women being pregnant is not necessarily without some risk and it is only possible with good planning, pre-assessment and counselling. They have a rigorous fitness assessment, and detailed plans are made for their ongoing surveillance. Once they become pregnant they are regularly reviewed by Dr Walker the cardiologist as well as by one of the obstetricians from the high-risk obstetric team.