5-year-old girl with a rare heart condition gets a new lease on life

When 5-year-old Amayah Lobo, from Thornhill, Ont., was just 24 weeks old Amayah was diagnosed with a rare heart condition called Hypo-Plastic Left Heart Syndrome or HLHS.

HLHS  is a birth defect that affects normal blood flow through the heart, and as the baby develops in the womb during pregnancy, the left side of the heart does not form correctly.

In Amayah’s case she her left ventricle did not form at all. Her parents were given limited options.

“We had to make a choice and we had to make the choice quickly. So we chose a three stage open heart surgery to redesign her heart. And that journey lasted about three years,” Gavin Lobo, Amayah’s father told Global News.

READ MORE: Ontario woman receives the gift of life; urges others to become organ donors

Since she was born Amayah has gone through several open heart surgeries and several catheter procedures to optimize her heart. Unfortunately though the surgeries did not work and Amayah’s only chance of survival was a heart transplant.

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“It was kind of having to go down that road again and having to make that choice for her life and fighting even harder for it. So a year and a half ago she was put on the heart transplant list,” Nel Lobo, Amayah’s mother said.

To keep her heart functioning and her body strong, Amayah was taking eight different types of medications a day, her energy levels were low, her finger nails and skin colour were grey.

A year and a half after being on the transplant list Amayah parents got the call.

“I got the call first. I think the three thoughts that went through my mind simultaneously were, ‘my God we got the call, this is it, after a year and a half,'” said Nel. “The second thing that went through my head was ‘wow, we may not see her again.’ And that sinks in and it hits you really hard. And lastly there is some other Mother and Father who has lost their child. It’s a burden you have to bear, but it’s a beautiful choice that they made.”

Today Amayah is happy and a burst of energy.

“I can jump, I can run, I have muscles, I am strong,” Amayah said.

READ MORE: ‘Heart in a box’: U of A research could revolutionize heart transplants

The support Amayah received from family and friends was overwhelming. Her neighbours next door, known every year for putting together a massive Halloween extravaganza with a full on haunted house (The Thornhill Woods Haunted House) to raise funds for Sick Kids, put the donations they collected in 2013 in Amayah’s name.

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This year’s donations will go to Sick Kids cardiac care unit also in the name of Amayah Lobo.

But there is more to this story. More about the special heart Amayah received that saved her life. For privacy reasons donors are not disclosed to the recipients or their families.

But in Amayah’s case, her parents say they were able to piece together who the donor may be.

Four months ago on July 26 a horrific accident took place at the Costco store in London, Ontario.

A car plowed into the front of the building hitting a pregnant woman and her two children. Only the mother and  one child survived. The woman’s 6-year-old daughter and unborn child did not.

Amayah’s parents believe the heart came from this little girl. Amayah went in for surgery at 2 a.m. on July 27.

“As Amayah was actually going into the surgery, the news was playing. The doctors thought we knew, they smiled. They were looking at us … the things that she needed was the blood type and she was a unique blood type, and it was the size, the size match,” Amayah’s parents  said.

“We just want to thank them and at some point would love to meet them if we can,” Amayah father said.

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Today Amayah is stronger, she has the colour back in her face, and a pep in the step. She still goes for weekly hospital visits and is on anti-rejection medication, but her future is hopeful, thanks to another family who gave Amayah life after losing a child so dear to them.

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