Eleven-month-old Lily Hague-Wautier of Abbotsford babbles happily as she plays with her collection of toys on the floor in the living room.
She is especially drawn to her reflection in a toy mirror, displaying a rosy-cheeked cherub with clear blue eyes and impossibly long lashes.
Every once in awhile, she catches the eye of her mom Hailey Wautier and she breaks into a wide grin, which her mom returns with equal adoration.
The bond between mom and child is evident, but at this young age, Lily doesn’t know how deeply this love truly extends.
Only three months ago, the baby was on the brink of death as her body was being ravaged by a liver disease known as biliary atresia. Without a transplant, she had no hope of survival.
Lily, who was born Jan. 5 of this year was diagnosed with the end-stage liver disease at the end of March. Within days, she went through surgery to remove her gall bladder, her appendix and more than half her liver and to re-position her intestine.
She was transferred at the end of April from B.C. Children’s Hospital in Vancouver to the University of Alberta Hospital in Edmonton because it is one of three in the country that performs liver transplants.
By then, Lily was showing the effects of her disease. Her stomach was bloated, she wasn’t growing and her skin and the whites of her eyes were yellow – the result of a substance known as bilirubin not being passed through her liver.
Doctors there initially told Wautier, 22, and her spouse Mark Hague, 21, that Lily would likely survive only three more months without a transplant.
Both her mom and dad were blood-type matches for Lily, but they were initially told they could not be donors because they were too tall and their livers too large.
Hague’s mom, who is smaller, was then selected as a match, but further complications prevented that from occurring.
In mid-May, Lily stopped breathing after she developed a near-fatal infection from the injection point in her arm where blood was regularly being drawn for testing. Doctors were able to revive her, but the incident left her weaker than ever.
Lily faced further health complications when one of the main vessels that moves blood to the liver “clotted off” and was no longer working.
This meant she also needed a vessel transplant – something that cannot be taken from a living donor.
The family was told that Lily would require both a liver and vessels from a deceased donor, but time was running out.
Lily’s name would be placed on a waiting list behind others who were considered to be a higher priority.
Wautier and Hague tried to prepare themselves for the worst, uncertain whether a liver would become available in time to save their daughter’s life.
Hope arose in the form of a doctor who informed the couple about a relatively new procedure being performed in Toronto that would require less waiting time. It involved using the liver from a live donor, combined with the vessels from a deceased.
Also, protocols are different in Toronto, and Hailey’s mom and dad wouldn’t necessarily be ruled out as donors there.
A live donor would mean that Lily would have a liver readily available and her wait to receive just vessels from a deceased donor would be shorter, because many liver transplants do not require the vessels.
The baby was transferred to the Hospital for Sick Children in Toronto on July 8 and, by Aug. 15, Wautier was approved to be her live donor.
The crucial call came at 9:30 a.m. on Aug. 21. The vessels were available from a deceased donor, and the transplant was a go. It was a bittersweet moment for the couple. They were ecstatic that their daughter had a chance for a healthy future, but saddened that someone else’s child had died to enable that to happen.
The following morning, Wautier showed up at Toronto General Hospital in the early morning to be prepped for Lily’s surgery. Through all the months and all the trauma, she had barely let herself cry, but now she let it all out as she neared the nurses’ station.
“I started bawling – happy tears obviously.”
Wautier first had a moment with her daughter – “I think I probably just said, ‘I love you. I’ll see you later’” – and was wheeled into the operating room at 7:30 a.m. By 2 p.m., 22 per cent of her liver had been removed for transplant into Lily. (That portion has since regenerated, leaving no ill effects for Wautier.)
The precious organ was then carefully placed in a container and walked through an underground tunnel to an operating room in the children’s hospital across the way. There, Lily had already been opened up, and the transplant surgery was completed by 10:22 p.m.
Lily’s deceased liver, which had been entirely removed, weighed two pounds, when it should have weighed 0.2 pounds for a baby of her age.
Wautier, still in a drug-induced stupor from her surgery, was awakened around midnight and informed that Lily’s surgery went well. Wautier saw her for the first time three days later and was amazed at the difference in her daughter.
“She started getting pink cheeks, and her eyes were white and clear.”
Lily spent a total of 200 days in hospital in her few short months of life, but on Oct. 11, she was finally able to go home.
She is now thriving. She has put on weight and was expected to take up to a year to adapt from a feeding tube to a bottle, but mastered that within a month.
She is behind on some developmental milestones, such as rolling over and crawling, due to months of being confined to a hospital bed, but is expected to progress quickly. Lily is otherwise a normal, healthy baby with no signs of her traumatic beginning.
“She’s very outgoing. She’s a very happy girl – always giggling or smiling or talking,” Wautier said.
Lily’s first birthday is fast approaching, and plans are underway for a big celebration. Wautier smiles at the thought of a joyous occasion in a year filled with such turmoil. It is something she will hold on to.