THE birth of a child should be one of the happiest days of your life, but for the parents of a child born with a serious heart condition, joy was mixed with pain.
When Jessica Barnes was born one month early, 10 weeks ago, mother Gemma Stewart, of Pilgrim’s Walk, West Worthing, was concerned by how little she was eating and her “jaundiced” appearance.
She was taken to Worthing Hospital, in Lyndhurst Road, but when staff could not diagnose what was wrong with her she was transferred to the Royal Brompton & Harefield NHS Foundation Trust, in Chelsea, which specialises in heart treatment and has an outreach clinic at Worthing Hospital.
But when Gemma, 23, and her boyfriend, Darren Barnes, 26, arrived at the Royal Brompton hours later, they were told their daughter had a critical disfigurement of the heart and would die unless urgent surgery was performed, which offered only a one in five chance of survival.
Gemma said: “We were in complete shock, and then went to the family room and cried. We couldn’t believe what was happening.”
Hours later, an inflatable balloon was placed into Jessica’s heart, saving her life, but she was then kept in intensive care, under sedation, for two weeks, before spending a further week on a hospital ward.
Since then, Jessica has returned home and has been fed food and medication through a tube, while Gemma and Darren have remained in regular contact with the Royal Brompton to receive medical advice and support.
Gemma and Darren said Jessica faced a lifetime of heart operations, including open-heart surgery when her weight reaches between 10 and 12lbs, but they hoped it would be provided by the Royal Brompton.
Both believe Jessica would not be alive today were it not for the medical expertise of staff at the Royal Brompton.
Darren said: “We wouldn’t have our daughter if it wasn’t for the Brompton. They are so professional and caring when it comes to the needs of babies and their parents.”
Jessica added: “You speak to parents who have babies with half a heart and they tell you the Brompton built half a heart – it’s incredible.”
The joint committee of Primary Care Trusts released its recommendations in February, which include proposals to discontinue children’s heart surgery at Royal Brompton.
This would also lead to the Royal Brompton’s outreach clinic being discontinued at Worthing Hospital, although a spokesman for Worthing Hospital said this service would be replaced.
Darren and Jessica have started petitions in the Continental Café, Montague Street, and in Dover, where Darren’s family lives, to save the Brompton from closure.
So far, more than 26,000 people have signed a petition by the hospital to stop children’s heart surgery from being discontinued there.