Upon learning they are pregnant, parents dream of bringing their newborn baby home for the first time. But sadly not all parents get to take their bundle of joy home right away. The Phillips family had to wait over a year and a half to make their dream come true of bringing their baby Malika home.
Malika was born with a diaphragmatic hernia, a life-threatening condition which caused her stomach and intestines to shift up and sit on her left lung. This meant that her tiny lung was underdeveloped and unable to function normally. Malika was also born with an incredibly rare genetic disorder, called Wilms tumour 1 mutation, which would eventually cause her kidneys to fail, and would most likely lead to kidney cancer.
Facing all of this as a single mother with two other children at home, Amy Phillips needed to split her time between CHEO and her hometown of Brockville. When Amy was unable to be at the hospital, CHEO doctors, nurses and volunteers cared for Malika like she was one of their own. “She has an amazing bond with her care team, they are her family,” says Amy.
But just when the Phillips family was finally looking forward to going home, the worst happened; at just two months old, Malika’s kidneys failed, and she was rushed into emergency surgery and then dialysis. “She was literally dying on me,” says Amy. To avoid the increasingly significant risk of cancer, Malika’s kidneys needed to be removed immediately. To replace the function of her kidneys, she would need to spend two to two and a half hours every single day on dialysis until becoming strong enough for a kidney transplant. This also meant that Malika would still be unable to go home since hospitals closer to home are not equipped to perform dialysis on a baby.
Finally after a year and a half long wait, Malika waved goodbye to the friends she made at CHEO, and went home for the first time. Malika has now been back at home with her family in Brockville for a couple of months, healthier than ever and awaiting a kidney transplant. The Phillips family is receiving support from amazing volunteer drivers and caregivers who help Amy take care of Malika and make sure that she is able to get to her many appointments.
In her first year and half of life, Malika has been through an incredible journey, but Amy knows it isn’t smooth sailing yet. “We’re not done with our scary times, there’s definitely more still ahead of us,” Amy says. But the Phillips family will continue to take it one day at a time. “We will enjoy Malika while we have her, because we never know what will happen tomorrow,” reflects Amy.
The sad news is that while Malika is finally healthy enough for a kidney transplant, no one in her family is a match. She will go on a waitlist to find her new kidney. But Amy remains positive: “It’s been a rough road to get here, but everybody believes Malika will get that kidney and eventually be just fine.”