By Gillian Slade on October 27, 2017.
UPDATE: There has been a tragic turn of events for baby Lily and her parents of Medicine Hat.
“Lily took a bad turn last night. All her stats dropped,” said Luke Gallant and his wife Anna Ji of their daughter Lily born Oct. 5.
Lily has been on life support at Stollery Children’s Hospital in Edmonton with a diagnosis of alveolar capillary dysplasia with misalignment of the pulmonary veins. Luke and Anna had been considering the option of a double lung transplant in the U.S.
“The team was able to keep her alive however after that turn, the team … suggested it time to let her have some peace,” said Luke in an email to the News on Thursday.
Arrangements were made for the couple to spend some time with her “one last time”, said Luke.
“Once arrangements are taken care of, and we have had some time with her, the Dr will clamp the lines and her blood will stop flowing with oxygen…causing her to pass in Anna’s arms. Then I carry her to the morgue,” said Luke.
The excitement of the birth of a local couple’s daughter quickly turned to anguish as it became apparent how desperately ill she is.
When Lily Gallant was born on Oct. 5 in Medicine Hat to Luke Gallant and Anna Ji, she was not moving or crying and had an irregular heart beat.
She was airlifted to Calgary Foothills Hospital the same day because she was not breathing and her lungs were collapsing, said Luke.
“One thing after another kept happening to her,” he said.
Put on life support, Lily was later transferred to Calgary Children’s Hospital and then Stollery Children’s Hospital in Edmonton where a full diagnosis was made: Alveolar capillary dysplasia with misalignment of the pulmonary veins.
“According to the specialist here, it is a one-in-a-million case and is fatal,” said Luke.
Even on life support there have continued to be moments of crisis for little Lily.
“I would love to say that she has been stable but this has been insanely up and down,” said Luke. “Yesterday (Tuesday) we almost lost her four times.”
Luke and Anna have been researching every option available. One is a double lung transplant and there is only one hospital, St. Louis Children’s Hospital, evaluating Lily’s test results including a lung biopsy, to see if a transplant is feasible, said Luke.
Lily is in such fragile condition that jut moving her creates significant risk.
“Travelling four hours on a really fast jet with the pressure and landing and takeoff is extremely, extremely high-risk,” said Luke.
It is a little early to say what the financial cost would be and what assistance will be offered, said Luke.
The chance of getting an infant transplant donor is another hurdle.
The stress on the couple has been enormous. Luke and Anna are weighing up the option of the lung transplant and even “cessation of life.”
“Having to make a decision on whether she lives or dies is really, really stressful, really hard,” said Luke.
Everything had seemed fine during the pregnancy.
“We had no idea before she was born. It did not show on the ultrasound,” said Luke.
There was a small chance there was fluid around her heart but after the ultrasound that seemed to have gone away, he explained.
Luke and Anna are facing additional expenses while in Edmonton, not to mention the cost of medical treatment in the U.S. if that becomes an option. A friend has set up a GoFundMe page