{"id":2601,"date":"2024-09-04T13:15:47","date_gmt":"2024-09-04T19:15:47","guid":{"rendered":"http:\/\/liver.ca\/event\/stroller-spotlight-little-warrior\/"},"modified":"2025-01-22T11:03:30","modified_gmt":"2025-01-22T18:03:30","slug":"spot-poussette-petit-guerrier","status":"publish","type":"event","link":"https:\/\/liver.ca\/fr\/event\/stroller-spotlight-little-warrior\/","title":{"rendered":"Pleins feux sur les poussettes - Little Warrior"},"excerpt":{"rendered":"","protected":false},"author":7,"featured_media":2602,"template":"","meta":{"_acf_changed":false},"class_list":["post-2601","event","type-event","status-publish","has-post-thumbnail","hentry"],"acf":{"start_date":null,"end_date":null,"location":"","blocks":[{"acf_fc_layout":"text","text":"

On November 8, 2010, Arlene and Tony Bhathal welcomed their second child, Lillian.<\/p>

Three weeks postpartum, Lillian\u2019s eyes began to turn yellow and after a visit to the clinic, the pediatrician determined that she was likely suffering from breast milk jaundice. Arlene and Tony immediately switched Lillian over to formula, and scheduled a follow up appointment two weeks later.<\/p>

\"babyDuring their follow up appointment, the pediatrician did a series of tests and discovered that Lillian\u2019s liver wasn\u2019t in the right place and was firmer than usual. They were immediately sent to the Children\u2019s Hospital in Eastern Ontario (CHEO), in Ottawa, for tests, and phototherapy treatment. But after eight hours under the light, there were no changes. Lillian was admitted to CHEO and underwent what seemed like an endless series of needles, tests, scans, MRIs and ultrasounds.<\/p>

At six weeks old, Lillian was diagnosed with biliary atresia<\/a>, a relatively rare disease that begins in early infancy and affects about one in every 10,000 to 20,000 infants. Lillian was immediately prepared for her first major surgery, called a kasai procedure, where damaged bile ducts from outside the liver are removed and the small intestine is attached to the liver, providing a path that allows bile to drain from the liver.<\/p>

Lillian underwent her surgery on New Year\u2019s Eve, 2010.<\/p>

\"LillianAfter three days in the ICU, and a month in the hospital waiting for the fluids to drain from her liver, finally bringing Lillian home was a relief for Arlene and Tony, but it was also an incredible challenge for the family. Lillian was endlessly hungry, eating six to eight bottles a night, and going through more than 15 diapers a day. But her hunger was matched by her exhaustion, often falling asleep in the middle of feeds, only to wake up again minutes later, just as hungry. She also suffered from severe nose bleeds and ascites (a condition where fluid builds up in the belly), a side effect of biliary atresia.<\/p>

Lillian\u2019s medications were also overwhelming \u2013 following her kasai procedure, she was taking around five different medications, a couple of times a day. A few months later, she was on 18 medications, 20 times a day.<\/p>

At nine months old, Arlene and Tony were told that their daughter\u2019s liver was failing \u2013 Lillian was put on a liver transplant list. Her family immediately began testing to see if they were a match for a live liver donation. To their relief, Tony was a match.<\/p>

\"BabyTo prepare for the transplant surgery, Tony got himself into optimal shape \u2013 he lost 50 pounds, went for bi-weekly blood work, and eventually, they received a date for the transplant, at the Hospital for Sick Children (SickKids) in Toronto. But just 15 hours before the surgery, the surgeon reviewed Lillian\u2019s case and based on her numbers and current state, believed that she was not in immediate need of the transplant, and cancelled the surgery. The family was confused and upset \u2013 after months of physical, mental and emotional preparation, canceling the surgery was incredibly frustrating.<\/p>

Not long after, back at CHEO, Lillian\u2019s team discovered new concerns \u2013 varices in her esophagus<\/a> \u2013 and was sent back to Sick Kids to treat them. When they arrived, the surgeon was unable to treat them \u2013 she was just too small for the necessary procedure to work. Upon review of her history and current state, including the ascites that had not subsided, a new surgeon took up Lillian\u2019s case and pushed for her to undergo transplant surgery immediately.<\/p>

And at 16 months, Lillian received a portion of her father\u2019s liver.<\/p>

\"LillianWithin five days, Tony recovered enough to be released from hospital, and Lillian followed suit just thirteen days after her dad.<\/p>

Now 10 years old, Lillian\u2019s journey continues to be challenging \u2013 a number of liver-related, and unrelated health concerns, endless tests and blood work \u2013 but her liver disease hasn\u2019t slowed her down. She loves soccer, camping, hiking, swimming, just to name a few.<\/p>

\u201cShe\u2019s so strong \u2013 she\u2019s a warrior,\u201d said Arlene. \u201cEven when she was at her worst healthwise, the whole time she was so happy and spunky. If she wasn\u2019t in pain and crying, she would be smiling. She was so happy even though she was in so much pain.\u201d<\/p>

The Bhathal family is grateful to the medical teams that have, and continue to, support Lillian\u2019s health journey, and it\u2019s because of this that they take part in the Canadian Liver Foundation\u2019s Stroll for Liver<\/a>. Since 2013, they have joined up with five families in their neighbourhood, raising funds for the Canadian Liver Foundation.<\/p>

From door-to-door canvassing to lemonade stands and selling homemade bookmarks, necklaces and cookies \u2013 the community rallies around the Bhathals to help support their Stroll campaign.<\/p>

\"Lillian\u201cWe need to keep funding important research,\u201d said Tony. \u201cBiliary atresia has no known cause, and no cure \u2013 we need science and research to keep working, and hopefully change that one day.\u201d<\/p>

\u201cWe also do it for education and awareness,\u201d said Arlene. \u201cEarly detection is a matter of life or death for a child born with biliary atresia. Parents and pediatricians all need to be educated on the signs \u2013 we need the knowledge so that no more lives are lost unnecessarily.\u201d<\/p>

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