Tuesday night both infants were in the operating room at Sick Kids Hospital in Toronto. One would be receiving a heart, the other was being removed from life support in order for the heart to be ready.
The little fighter who had survived only by life support did the impossible. She breathed on her own.
The girls were taken back to their beds at the hospital. A miracle has happened.
Kaylee has the very rare Joubert syndrome, a malformation of the brain and brain stem that can stop her breathing. She shouldn’t still be alive. But no one seems to have gotten that through the baby who is surviving against all the odds.
Her parents Jason Wallace and Crystal Vitelli know that she’s a miracle and a little fighter.
The Globe and Mail quotes her father:
“Kaylee’s a very complex little girl that’s going to make her decision on her terms and nobody else’s,” Mr. Wallace said.
“When you stop breathing when you’re sleeping 100 times an hour, it’s not compatible with life. But she’s showing everybody else, ‘I am compatible with life.’”
Then there is little Lillian, the baby that needs a heart. It was expected that she would today have a healthy heart beating in her tiny chest but the miracle of a child not ready to die occurred.
Lillian O’Connor who now lays in a hospital bed in the balance. The one-year-old needs a heart. She’s back on the Trillium Gift of Life Network’s transplant waiting list.
Her parents are glad for the Wallace family.
The Globe and Mail reports:
“I’m glad we met Jason and his family,” Mr. O’Connor said. “It’s not over for them, it’s definitely not over for us. …. Being offered that gift is more than anybody here would ever know.”
It’s down to just weeks or months for little Lillian who is dying from truncus arteriosus, which means her heart can’t get enough oxygen to her body.
As the miracle continues to play out the ethics of donation after cardiac (DCD) death is again being brought into question. There are times that a heart does not beat but there is brain activity. Which one cancels the other out? When is death really death.
When does death happen is being called into question and are people who could be saved being used as donors before their due date is up?
In Canada that question has been in play since February 2005 when a national forum consensus said that the nation should resume harvesting organs under DCD in addition to NDD (Neurological Determination of Death). That decision could increase organ donation by 20 per cent.
Before DCD can take place the patient needs to have a non-recoverable injury or illness, dependence on life-sustaining therapy, intention to take the patient off of life support and anticipation of imminent death after withdrawal of life-sustaining therapy.
On Tuesday night those qualifiers were in place when the infants were taken to the operating room and a miracle occurred.
In Canada there were 4,380 in 2008 waiting an organ to stay alive. Since that time 215 died before an organ could be found.
The wait for an organ is long. Those needing a kidney on average have three years to wait in Alberta and 8 years in Toronto.
Canada does not have an opt out policy that some countries have. In Europe it’s assumed you want to donate an organ unless you have said you don’t. In Canada the opposite is assumed.
“The most important step is to have a discussion with your immediate family,” George Marcello, who is alive because of a liver donation told CBC News. “They’re the ones that are going to be approached, and it will probably be during a tragic time, and they have to be as prepared as possible to say yes [to donating your organs] … and if they’re not prepared, they’re probably going to say no.”
“We have to reform our system because our system isn’t friendly and Canadians lead very busy lives … you might put it off and you might not ever get around to having that discussion with your family.”
Some also are questioning the ethics of this story being taken to the media. The Canadian Press reports:
“These are not the kinds of decisions that have to be taken in the newspapers,” says Trudo Lemmens, a professor of health law and bioethics at the University of Toronto.
“I guess one of the things you could ask is: Is having this media frenzy around this (case), is it a sufficient respect for that baby’s life and death?” wonders ethicist Margaret Somerville.
It is very rare for the names of donors to be listed on the news. The parents in this case went public. But that is the exception. Generally those who receive the gift of life do not know who saved them.
Still this is a special case.
Miracles are rare. They give hope. And little Kaylee is certainly a miracle.