TANESHA Ives underwent open heart surgery at just five weeks old.
Since then, the eight-year-old has had other major surgeries and will require more in future.
As thanks for the care she has received at Leeds General Infirmary, her friends and teachers at Joseph Locke Primary will done red clothes on February 2 to raise money for the hospital’s Children’s Heart Surgery fund.
Tanesha was born with complete atrioventricular septal defect, which meant there was a hole between the top and bottom chambers in her heart and there is a shared valve in the middle, rather than two separate ones.
Her mum Amanda Bell, 43, of Park Road, Barnsley, said although her pregnancy had been normal, she noticed Tanesha’s skin was mottled when she was three weeks old.
Tanesha was referred to Barnsley Hospital, where a heart murmur was discovered, before being transferred to LGI where her condition was diagnosed and Amanda was told she would need open heart surgery.
She said: “I was in a mess. I asked what would happen if she didn’t have the surgery, and the doctor said she would die.
“I phoned my mum and sister to let them know what was happening. When I came back, they had taken Tanesha and she was on sedatives, a feeding tube and machines. From then on I couldn’t really touch her, or pick her up because her heart rate would go too high.”
Tanesha was kept in hospital on special high calorie milk to try and increase her weight, but at five weeks old doctors feared she might die. She was rushed into theatre the next morning for the nine-and-a-half hour operation.
Amanda said: “I was so scared. I was worried she was going to die on the operating table, as the surgeon said there was a two in four chance that could happen. I was worried I wasn’t going to see her again.”
After surgery, Tanesha spent a week in the cardiac intensive care unit. She later developed sepsis and bowel problems but luckily did not need further surgery.
Tanesha spent a total of eight weeks in hospital but when she was 18 months old, she suffered complete heart block, which is where the heart’s natural pacemaker can’t regulate the heartbeat itself, and had a pacemaker fitted.
In 2015, she stopped breathing in her sleep and was rushed to Barnsley Hospital and then Leeds where it was discovered the pacemaker had stopped working. She had more surgery to fit a new one, and to remove the old one.
Amanda said: “Tanesha will require more surgery for new pacemakers, as they only last about five years. But she copes really well. She is loving and kind, but has anxiety issues and can be angry but I think that must be because of what she has been through.
“She has a little sister, Ashante, who she loves to bits and she’s into Minecraft.
“She likes school, she struggles sometimes because of all the time she has had off, but she does her best and is catching up.”
