PARENTS of a baby with three separate heart defects fear it could mean the difference between life and death if a heart surgery unit closes.
Christer and Francesca Larsson’s baby daughter Sofia had two life-saving operations and spent three months at Glenfield hospital in Leicester when she was just a few months old but they are worried the unit could close under a recent review of 11 child heart surgery centres nationally.
The aim is to close some, leaving complex heart operations to be carried out at fewer, more expert centres.
Four options have now been put forward to public consultation, three of which involve Glenfield closing, prompting Mr and Mrs Larsson to call on parents of other children who have benefitted from the expert care offered at the unit to join their fight to keep it open.
Francesca (29), of Stonegate, Spalding, said: “Glenfield has been an absolute lifeline to my daughter and family, not only medically but also emotionally.
“It offers excellent care and the staff are so professional and caring, they become almost like part of your family.
“I would like to see anyone who has had experience of Glenfield to stand up and be counted in the fight to save what is an amazing unit and a credit to our region.
“If Glenfield does stop performing surgery it would be worrying because we would face a longer journey to London. If it was an emergency that could mean the difference between life and death.”
Sofia suffers from the rare condition Partial Anomolous Pulmonary Venous Connections, which means two of her pulmonary veins connect to the wrong side of her heart, as well as Atrial Septal Defect and Ventricular Septal Defect - both holes in the heart.
She was diagnosed when she was just over a month old after Francesca noticed she was breathing faster than her older daughter Isabella, now three, had done as a baby and had icy cold hands and feet.
Initially it was thought Sofia was suffering from a chest infection, but when her condition failed to improve more tests showed she had a heart problem and she was transferred to Glenfield Hospital.
Francesca said: “By the time we got there she was quite poorly and we were told her heart was failing. I can’t begin to describe how devastating it is to hear that your child is so ill.”
Sofia had a life-saving operation, but shortly after surgery she got flu and spent a month in intensive care and high dependency before they repeated the surgery to tighten a band around her pulmonary artery.
That was about six months ago and Sofia, who turned one just last weekend, is now at recovering at home and doing well.
She is due to return to Glenfield next month for a check-up and it is hoped that further surgery to correct the problems with her heart won’t be necessary until she is three or four, although it may be sooner if her health suffers.
She will also need lifelong check-ups with a cardiologist.
Anyone interested in attending the consultation event at the Walker Stadium in Leicester on June 16 can sign up at www.heartlink-glenfield.org.uk