The mother of a four-month-old baby who was wrongly diagnosed with colic is speaking out after her child was ultimately forced to undergo open-heart surgery following a heart attack.
Carter Hornshaw spent six hours under the knife after being diagnosed with the rare ALCAPA syndrome.
Little Carter was given a 50/50 chance of survival after being rushed over 60 miles to Leeds General Infirmary.
Leeds is a city located 190 miles northwest of London.
Carter’s mom, Nikita Kilvington, 20, took him to the doctor’s every day for four days as she was convinced he was not well, only to get a different diagnosis each time.
She is now warning other parents to get a second opinion if they are concerned about the original diagnosis, and says she dreads to think what would have happened if she hadn’t trusted her instincts.
“I didn’t believe a word the doctors were saying if I’m honest, as they kept changing their mind," Kilvington said.
“At first we were told he had really bad colic[;] when I took him back the next day and he was worse, it was scarlet fever.
“We were then told by another doctor the day after it was a throat infection. Nothing seemed to be adding up and it was so frustrating.”
On June 29, concerned Nikita took matters into her own hands and took Carter to Hull Royal Infirmary, where his health rapidly deteriorated.
“He was literally dying in the [baby carriage] when we got to the hospital, he was really struggling to breathe and his heart had swollen. He was covered in tubes, I was a mess seeing him look like that. I felt helpless," said Kilvington.
“It felt like a dream, it all happened so quick it was surreal… it must have been an hour after we arrived at A&E we were [rushed] all the way to Leeds.”
Once at the Leeds General Infirmary, Carter was placed in ICU and the family had to wait two anxious days before Carter was finally diagnosed with ALCAPA.
ALCAPA is a heart defect in the left coronary artery, which carries blood to the heart muscle, is connected to the pulmonary artery instead of the aorta.
“They put a camera inside and finally diagnosed Carter with ALCAPA. It was reassuring to finally have a diagnosis but I was still concerned because it is so rare," Kilvington said. “The doctor told me he only deals with around three cases a year, so I was still very scared for Carter and if he was going to pull through. The next day he suffered a mini heart attack because his heart was so swollen and couldn't get oxygen to it — it was horrendous."
The following day, Carter underwent open-heart surgery to save his life while his family waited anxiously.
“We were all on edge and we could not help but think the worst, I was beside myself. We were told it was a 50/50 chance that Carter would survive, and that's when it hit me I think and I completely broke down.”
Despite the many hours of surgery and being placed in an induced coma, Carter is now making an incredible recovery.
“He has recovered really well and he has amazed all the nurses with how well he’s doing. He will be in hospital for a couple of days, but it is terrifying to think what could have happened if we didn’t take him to hospital when we did," Kilvington said.
“I urge any parent who is worried to follow their instincts — without mine, Carter might not be with us today.”