A Castlegar baby with a rare genetic disorder is making progress and her family hopes to bring her home next month.
Zoey Uniat was born to Kendra (Wayling) and Brett Uniat on Thanksgiving 2020 with Congenital Central Hypoventilation Syndrome.
In addition to a number of serious health risks, the disorder causes the baby’s breathing to become too shallow, especially during sleep. This results in an excess of carbon dioxide and insufficient levels of oxygen in her blood. To provide proper ventilation, Zoey now has a tracheostomy tube. She also has a gastrostomy tube to assist with feeding during recovery and if complications with the trach tube arise.
At three months old, Zoey is still in Vancouver being treated at BC Children’s Hospital.
Zoey’s mom reports she has begun to smile and laugh in her own way.
“She is happy and lively and full of smiles,” said Kendra in a recent Facebook post.
“We can hear little squeaks as she is able to push some air past her trach.”
According to her mom she’s grown particularly fond of Chris Stapleton’s song Starting Over, especially when her daddy plays guitar and mommy sings.
“She likes to dance while we play,” said Kendra.
Zoey has also been able to return to breastfeeding after a one-month pause due to recovery from the tracheostomy operation.
Unfortunately there is still a long way to go. Zoey needs to be ventilated 24/7. The next step is working towards having her off the humidifier for two hours at a time so the family can be somewhat mobile for walks or drives.
“If all continues to go well we are hoping to be headed home by the middle of February,” said Kendra.
A GoFundMe campaign has been started to help support the family during this difficult time. So far it has raised over $50,000.
Kendra and Brett, along with their parents Christine (Bourchier) and Rand Wayling of Castlegar, and Heather and Ernie Uniat of Cochrane, are extremely grateful for all the love, support and donations that friends, family and anonymous donors have shared.
Donations can be made through the Help bring Zoey Uniat home GoFundMe page, or directly through e-transfer to Zoeyuniat@gmail.com.