Amazing Baby Stories Organ Donation

Amazing Baby Continues To Fight After Being Taken Of Respirator

Baby Kaylee continued to defy the odds yesterday, breathing on her own for a second day after she was removed from a respirator in anticipation that she would become a heart donor for another infant.

The two-month-old baby has Joubert’s Syndrome, a malformation of the brain that can compromise breathing, balance and development, and is not usually fatal.

She was admitted to The Hospital for Sick Children on March 16. The next day her parents read a March 17 news report in the Toronto Sun about another patient in the neo-natal intensive care unit, Lillian O’Connor, of Prince Edward Island, born March 9 with a fatal heart defect. It said two surgeons were at the ready to fly anywhere in North America to retrieve a suitable transplant heart. When Kaylee’s diagnosis was judged so severe she would die without continued breathing support, the babies seemed star-crossed. Kaylee could die, and her heart would keep beating.

The problem was that the hospital did not agree, saying Kaylee’s heart could be damaged as she died naturally. It later relented, saying in a statement this was a “complex situation” that “evolves on a day-to-day, and moment-to-moment basis.”

When her breathing machine was disconnected on Tuesday night, the country was in awe, not just for the scientific rarity and wonder of the impending transplant, but also the powerful image of the beating heart.

By Wednesday morning it became apparent that Kaylee’s survival may put the donor hopes in jeopardy. A donor and a recipient had been pre-matched for a life-saving donation, that was to not happen because the donor was still alive.

Today, this amazing baby is requiring oxygen to help her breathe, but is not on a respirator. Her parents said they don’t know if or when they would be asked to decide about putting her back on the machine because her breathing remains extremely erratic. She sporadically has periods “where she doesn’t breathe for 30 to 50 seconds,” her dad told the media today.

While no one knows what will happen over the next day, week or month, doctors have repeatedly told Kaylee’s parents that their daughter is going to die.

If she stabilizes doctors have told her parents that if they take her home, it would only be so she could die outside of hospital.

We wish this family strength and hope that the general public understands that it is hard to be under the microscope when your baby is slowly dying.

It was very brave of them to offer their daughter’s heart to any baby. Across Ontario, 26 children are awaiting organs, eight in need of a heart.

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About the author

Lisa Arneill

Founder of Growing Your Baby and World Traveled Family. Canadian mom of 2 boys, photo addict, lover of bulldogs, and museumgoer. Always looking for our next vacation spot!


  • I totally get angry when I hear anything about this story. I think it is sickening that doctors are allowing this child to slowly die. The father has said over and over that his daughter just needs breathing support when she sleeps. That awake she is fine, smiling and happy. So why the heck are they not traching her and letting her live her life?!?!?!? I have read up on the syndrome she has and it is mild to moderate disability. Severe is not even mentioned. Her quality of life could be better than my sons but yet they are going to let her die? It just makes no sense at all to me why these parents are not doing everything that they can to save their daughter and take her home. Do they not want to deal with a disabled child? I didn’t realize that this was a choice that we as parents were allowed to make!

    As well, I have not liked at all how the mother seems to have NO emotion on camera. I didn’t even realize that she was the mother until it was said! And the father lashing out at the public for what they are saying…well you asked for it when you decided to go public! You cannot think that people all over are going to agree with what you are doing. Especially the parents of special needs children themselves.

    This story angers me as much as the octo mom!

  • I completely agree with Shannon. If it were my baby, I’d be fighting tooth and nail to do anything possible to keep her alive. So she lives with a respirator — big deal. Maybe eventually there will be some treatment that can cure her.

  • There are those of us who are warrior moms who would fight to the very end for our babies, and there are those who listen to doctors, and lethargically exist on this planet. I am glad to be the warrior mom of my little ones…they are alive and thriving thanks to some fierce battles I have fought with the doctors, and my kids are running around right now having a blast. Parents should never give up, no matter what the diagnosis…Doctors are merely ‘practicing’ medicine. Parents are living it and must be their childrens advocate 24/7!

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