The Main Brook girl was diagnosed early in life with a rare congenital heart defect, for which she has already undergone three open-heart surgeries. She also has a pacemaker to regulate her heart rhythms.
She is currently recovering from the latest of these surgeries at Toronto’s Hospital for Sick Children. Complications arising from the April 25 operation have kept Sara and her parents, Danielle Galgay Smith and Dave Smith, at the hospital ever since.
Sara’s heart defect has a long name – hypoplastic right heart double outlet right ventricle transposition of the great vessels pulmonary stenosis enlarged ventricular septal defect.
According to Danielle, Sara’s surgery went well, but she’s been having draining issues that have not subsided. This is common immediately after open-heart surgeries and, typically, a drain tube must be put in for a couple of days afterwards.
However, Sara tested positive for chylothorax, which means her body doesn’t break down fat molecules, and the draining has not stopped.
“She’s still draining excessively, which is not common at all,” said Danielle.
The team in Toronto believes they have tried everything and have sent Sara’s files to Philadelphia where, Danielle says, the thoracic team is one of the best in the world.
“We’ve all agreed we don’t want to put Sara through any more invasive procedures,” she said. “So right now, we’re waiting and we should have some answers from them within the next week. And either the possibility is there that we go to Philadelphia to have a procedure, or they fly someone from Philadelphia in here.”
In the meantime, Sara is keeping her spirits up with the hospital’s help. There’s a playroom on her floor, with clowns around to make her laugh, and a child life specialist who helps kids who have extended hospital stays.
“They have a great system here,” said Danielle.
For Sara’s parents, it’s been an understandably difficult time. Danielle says when they came to the Toronto hospital, they expected to be there for about two weeks. When she spoke to the Northern Pen, their stay was approaching 90 days.
“It’s just been a challenge being away from home,” she said.
There is the anxiety of being worried about their little girl, and also the expenses and stress this creates as well.
“Every cent adds up,” she added. “When you’re keeping your life at home and paying your bills. And Ronald McDonald House (where they have a room) is great but, at the end of the month, you’re still paying rent there. And then we have to eat. All that is 100 per cent out of pocket.”
And there’s still a long road ahead.
Danielle notes when Sara is discharged from the Toronto hospital, they will have to spend some time in St. John’s before they can return home to Main Brook. They don’t know how long that stay will be.
However, the family continues to receive lots of support from family and friends. Danielle’s mother has stayed with them at the hospital from the very beginning.
And Danielle says Dave’s boss at Coates’ Mill has been “amazing” and very supportive, holding his job until he returns.
“We’re so grateful … Main Brook, Roddickton-Bide Arm, all those areas have done something to help us,” said Danielle. “They’ve given us amazing support ever since we found out about Sara’s condition.”
Last week, the Northern Pen reported that a group in the Roddickton-Bide Arm and Main Brook area had started selling tickets on a Tupperware basket to raise money for Sara and her family. They had raised over $2,400 as of July 12, with more coming in.
A GoFundMe page had been set up earlier as well and currently there’s a YouCaring page. Anyone interested in donating to help Sara’s recovery can visit https://www.youcaring.com/danielleandordavesmith-871610
Danielle wished to thank anyone who has reached out and helped in any way over the past few months.
“It’s just been totally overwhelming,” she said.
UPDATE: Since the writing of the story, Sara has been discharged to the Ronald McDonald House as they await to hear from Philadelphia.