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 toward relieving some of that anxiety, with comfort provided by numerous ultrasounds and blood tests charting a baby’s journey toward a normal birth—but sometimes nature has a way of confirming 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 upended when their beautiful daughter Tessa came into the world on March 4.
“They knew something was wrong right away,” said Ms. Niven. Although bloodwork has not yet confirmed the initial diagnosis through genetic testing, everything is consistent with Treacher Collins Syndrome, a rare and unexpected genetic disorder that required her to be intubated and will see her on a feeding tube until she has grown enough to undergo surgery to repair an obstruction in her nasal passage.
“It was a complete surprise,” said Ms. Niven, as all of the tests and (five) ultrasounds had indicated all was well with baby Tessa in the womb. Little Tessa has a few other challenges, including underdeveloped ears, but it is the nasal obstruction that is causing the most worry. “Newborns breathe through their noses,” said Ms. Niven. Baby Tessa also needs to be fed through a tube directly into her stomach, something that will also be in place for some time.
Tessa is a very small baby, explained Ms. Niven, and as such her doctors do not feel she is up to having any surgical procedures just yet. So, for the next year or so, baby Tessa will have to be fed via syringe and a gastronomical tube.
“When she is around one-year-old she may be able to take some food orally,” said Ms. Niven.
Tessa is currently at Toronto’s SickKids, The Hospital for Sick Children. Her parents are staying at Ronald McDonald House and will be attending Holland Bloorview Kids Rehabilitation Hospital to learn how to look after Tessa’s needs when she gets home.
One heartbreaking aspect of Tessa’s birth is that her mother was unable to hold her due to her condition.
“Tessa has to be ‘eyes-on,’ 24/7,” explains her mother. Once home, a nurse will be required to assist the family with her care. “We will have the nurse in at night,” said Ms. Niven, who explained that the family qualifies for eight hours of nursing care a day for Tessa. “We chose to have the nurse at night, because eventually Trent will have to go back to work (he is currently taking his holidays 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 be on alert every minute of the day. “Hopefully, we will be able to manage the day,” said Ms. Niven.
Tessa’s breathing tube has to be suctioned regularly, up to 20 times an hour, to ensure she can breathe and those syringes are one-time use.
Between staying in Toronto and being away from home so they can be at their baby’s side and the many uncovered medical and living expenses in their future, the family will face significant economic challenges going forward.
“They are pretty amazing!” said Tessa’s aunt Tory Mallette of the parents. Ms. Mallette set up a GoFundMe page to raise funds for the couple’s expenses as they deal with Tessa’s ongoing medical challenges.
Ms. Niven admits that she and her husband might be better equipped emotionally to deal with the challenges they are facing, given they are both firefighters. “We have seen a lot during our work,” said Ms. Niven, but the support of family, friends and the community have been important for the couple in dealing with Tessa’s challenges.
Tessa’s Journey Home, the fundraiser to help Tessa’s family over the hump of the next two years, can be accessed at www.gofundme.com/f/tessas-journey-home. To date the fund has raised $53,155 with 491 donations.
