LEVACK—Every parent can relate to those anxious moments leading up to the birth of a first child. Modern medicine has come a long way to ease some of that anxiety, with the comfort provided by plenty of ultrasounds and blood tests charting a baby’s journey to a normal birth, but sometimes nature has a way of confirming the a parent’s worst fears.
The world of a young couple with island roots, Sudbury firefighters Victoria Niven, formerly of Spring Bay, and Trent Mallette, was turned upside down when their beautiful daughter Tessa came into the world on March 4.
“They knew straight away something was wrong,” Ms Niven said. Although blood work has yet to confirm the initial diagnosis through genetic testing, everything is consistent with Treacher Collins Syndrome, a rare and unexpected genetic condition that required her to be intubated and will see her on a catheter. feeding until she grew enough to undergo surgery to repair a blockage in her nasal passage.
“It was a complete surprise,” Ms Niven said, as all the tests and (five) ultrasounds said everything was fine with baby Tessa in the womb. Little Tessa has a few other challenges, including underdeveloped ears, but it’s the stuffy nose that’s causing the most concern. “Newborns breathe through their noses,” Ms Niven said. Baby Tessa also needs to be fed through a tube straight into her stomach, something that will also be in place for some time.
Tessa is a very small baby, Ms Niven explained, and as such her doctors do not believe she is ready for surgery just yet. So, for about a year, baby Tessa will have to be fed using a syringe and a gastronomic tube.
“When she’s about a year old she may be able to take food by mouth,” Ms Niven said.
Tessa currently works at SickKids in Toronto, The Hospital for Sick Children. Her parents live at Ronald McDonald House and will be attending Holland Bloorview Kids Rehabilitation Hospital to learn how to meet Tessa’s needs when she returns home.
A heartbreaking aspect of Tessa’s birth is that her mother was unable to hold her due to her condition.
“Tessa has to be ‘supervisor’, 24/7,” says her mother. Once home, a nurse will assist the family with their care. “We will bring the nurse in at night,” said Ms Niven, who explained that the family was entitled to eight hours of nursing care a day for Tessa.”We chose to have the nurse at night, because eventually Trent will have to return to work (he is currently on vacation to be with his wife and daughter) and that will allow us to get some sleep.” The rest of the day will require one of Tessa’s caregivers to be on alert every minute of the day. “Hopefully we can manage the day,” Ms. Niven said.
Tessa’s breathing tube needs to be suctioned regularly, up to 20 times an hour, to make sure she can breathe and these syringes are for single use only.
Between staying in Toronto and being away from home to be with their baby, and the many uncovered medical and living expenses in the future, the family will face significant economic challenges in the future.
“They’re pretty amazing!” Tessa’s aunt, Tory Mallette, said of the parents. Ms Mallette has set up a GoFundMe page to raise money for the couple’s expenses as they deal with Tessa’s ongoing medical challenges.
Ms Niven admits she and her husband might be better equipped emotionally to deal with the challenges they face, given that they are both firefighters. “We’ve seen a lot in the course of our work,” Ms Niven said, but the support of family, friends and the community has been important to the couple as they face Tessa’s challenges.
Tessa’s Journey Home, the fundraiser to help Tessa’s family over the next two years, can be accessed at www.gofundme.com/f/tessas-journey-home. To date, the fund has raised $53,155 through 491 donations.