A 7-month-old Wellington girl has died peacefully in the arms of her parents, who were desperately awaiting funding for a life-saving heart transplant.
Laurel Giles had been in Starship Children's Hospital for two months, after being diagnosed with dilated cardio myopathy - a condition which affects the heart muscles.
Her family were waiting to hear if the Health Ministry would approve funding for a heart transplant, that can only be performed in Australia, but she died just days before the funding was due to be approved.
The Ministry of Health chief medical officer, Dr Don Mackie, said last night he was "saddened to learn about this tragedy and we extend our sympathy to the family".
Mackie said funding for the operation was available but the ministry was awaiting further information from Australia which was "imminent".
"We were working as hard as we could, co-ordinating the planned transplant surgery with Australia," Mackie said, adding that the ministry had received an application for the surgery within only the past two weeks. While waiting for funding, the family had started its own fundraising.
"She's in such a bad way, and I didn't want to waste time . . . It's so frustrating waiting and waiting for funding, because we are so scared of missing the operation - of missing a heart," Laurel's mother, Patricia McNaughton, said on Friday before her daughter died. She had been told an operation would cost about $500,000.
Laurel died on Friday night after battling an unknown infection that caused her temperature to rise.
McNaughton said yesterday: "We got told yesterday [Friday] that she probably wasn't going to make it, but, of course we thought she could get through anything."
Eventually, though, she and partner Ashley Giles had to accept their little girl wasn't going to make it. McNaughton was able to lie down and hold Laurel. She said it was as if her baby knew it was "OK to go now. She just looked at me . . . It was peaceful. Her dad held her until she was gone".
Despite how ill she was in her final two months, Laurel had remained a happy, smiling baby. "She is honestly the happiest baby you'll ever meet. Even through all this, she is such a happy baby."
McNaughton said she would always remember her smile and her eyes. "Everyone would tell you she was the most amazing little baby . . . you didn't realise she was sick."
Laurel's condition was discovered when she became unwell a couple of months ago, prompting her parents to take her to Hutt Hospital's emergency unit, where she was found to be in acute heart failure. They had previously taken her to the doctor with concerns about a cough and breathing problems, but it was put down to reflux and asthma.
"[Her condition's] so rare in a baby. It isn't something a lot of doctors pick up on," McNaughton said.
Since the diagnosis, she and Giles had been on an "emotional rollercoaster" in Auckland, where they were staying in Ronald McDonald House or hotels with Laurel's 5-year-old sister Shante McClutchie.
Starship medical director Richard Aickin said he did not believe anything could have been done to change the outcome in Laurel's case. He said the last contact Starship had with Australia was a phone call with the CEO of Royal Children's Hospital in Melbourne, where the procedure would have been performed.
"We were just trying to get costings from them so that we could send that to the ministry to actually get the High Cost Treatment Pool approval.
"There is an administrative process there. But the key thing is . . . there has been no donor heart available for a child of this size during the time that we've been looking. The problem is that hearts for very small children come up incredibly rarely.
"You can be waiting in excess of a year. Our clinicians were always quite pessimistic that Laurel would be able to survive long enough given the long waiting period."
Aickin said Laurel's condition caused the heart to stop beating effectively. That would cause the muscles to stretch, and the heart could leak. A heart transplant was Laurel's last chance, he said.
McNaughton said everything had been done to try to keep Laurel alive, but the situation highlighted the importance of simple symptoms like a cough and trouble breathing being treated seriously. Treatment had to be readily available for babies in this situation, she said.
- © Fairfax NZ News
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