Baby Kaylee is Going Home, Lillian O’Connor Remains on Transplant List

Baby Kaylee Vitelli will be discharged tomorrow from the Hospital for Sick Children. She will go to live in Bradford with her parents Jason Wallace and Crystal Vitelli in Bradford. The three-month-old girl has Joubert syndrome, a rare malformation of the brain stem that can stop her from breathing. She caused a flurry of media coverage last month when her parents fought to donate Kaylee’s organs to another sick child, against initial doctor recommendations. The potential transplant was cancelled when Kaylee started breathing unassisted. The potential recipient, Lillian O’Connor, remains at the top of the infant heart-transplant waiting list.

But the relationship between parents and hospital – already tense due to Mr. Wallace’s regular media briefings on the hospital steps – worsened when Mr. Wallace and Ms. Vitelli publicly criticized the family’s treatment at the world-renowned hospital. Sick Kids staff stood by their care of Kaylee, adding that they understood the emotional pressure families are under when their child is sick. Days later, Mr. Wallace was removed from the hospital after one particularly heated exchange during which he accused staff of abusing them and their daughter.

The couple have launched a fundraising effort to help equip Ms. Vitelli’s parents’ home for Kaylee’s care. Kaylee’s parents weren’t aware of subsidized services available to them, said family spokesperson J.P. Pampena. The family will receive up to 48 hours a week of nursing care. A government service could provide $16,000 a year in palliative care subsidy. The family will also get $435 a month from the province for some supplies. Medical equipment such as oxygen tanks and feeding tubes have been arranged.

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