 "My baby needed heart surgery"Every year in the UK, more than 5,000 new babies are born with congenital heart defects. Forty years ago, only one in five children born with a heart defect survived. Today, thanks to advances in surgery and treatment, four in five children survive. Sadly, some children with congenital heart defects do not survive to adulthood, but with modern techniques, many of these conditions can be discovered early in life and successfully treated. However, heart problems can affect children and their parents throughout their lifetime - both physically and emotionally. Julie Gillin, whose son Danny was born with a congenital heart defect, shares her experiences of discovering that her baby was ill and enduring the heartache of surgery and treatment. Julie's story
"It was the moment I'd dreamed of through the dark days when, as we gently explained to our daughter Mary that our newborn son's heart was broken and needed fixing." "Our experience was all the more shocking because it was so unexpected. The pregnancy went smoothly and a 20-week scan was fine. Danny was born by caesarean on April 3 at the Jessop Wing of Sheffield Hospital, weighing in at 9 lbs and with a clean bill of health." "But our world was fractured the following day when the paediatrician's routine check picked up a heart murmur. A scan showed Danny's heart was struggling to pump effectively and that he could die. He was taken straight to an incubator in the Special Care Baby Unit while an ambulance was called." "The doctors wanted to get him to Leeds General Infirmary where there was a children's cardiac unit. I felt my own heart was going to burst as the paramedics took him away, not because I thought he might die, but that he might die without me." "I then found myself in another ambulance following Danny down the motorway. As soon as I arrived a nurse passed Danny to me. He had wires trailing all over the place attached to a bank of monitors, but I didn't care, we were together." "I was told Danny had a condition called coarctation of the aorta - a tight narrowing of the main artery to the heart - which meant his heart had to work extra hard to push blood through. Usually this makes babies breathless - they can't feed normally, become shocked and pale and need urgent treatment." "Danny's condition had been picked up early but he had other problems. One of the valves in his heart was faulty and it, along with another valve, was leaking. This could be because of the pressure caused by the coarctation, but we wouldn't know until after a surgeon had cut out the blockage." "Danny's heart was too weak for him breastfeed on demand so we alternated breastfeeding with tube-feeding milk I had expressed for him. Eight days later my husband John, Mary and I each gave Danny a kiss and whispered our goodbyes as he went to theatre."
"Then things got better and better. A follow-up scan showed only the faulty valve was now leaking and it didn't require treatment. We could take him home." "Danny will have regular scans to ensure his faulty valve and the repair grow with him. He also has to be careful about dental health to avoid endocarditis - an infection to the heart caused when bacteria from the mouth enters the bloodstream. He has a six-inch scar under his left arm but he won't be able to boast about it - two junior doctors have already missed it!" Where to next?
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"I held my son's face up to the bright spring sky and felt the breeze brush against our faces. "This is the sky, Danny," I said. "And I'm going to show you the moon and the stars. It's a wonderful world, my darling and you're going to have a wonderful life."
"The wait for news was torture but when the nurse came to find us she was smiling - the operation had gone well. In intensive care Mary, aged three, was upset by the large ventilator tube Danny needed to help him breath and give his body a rest. John and I were just relieved he had survived surgery and we were delighted when the nurse asked me to leave - Danny was dosed with morphine but he was nuzzling for me to feed him!"
