Charlotte teBogt’s smile is utterly infectious. Her bright eyes immediately command attention.
When the little six-month-old knows eyes are on her, she bounces and gives a big, toothless smile. Her red hair bounces along with her.
It’s hard to believe that only a few months ago she was on the operating table fighting for her life.
Charlotte was diagnosed with coarctation of the aorta and a large ventricular septal defect (VSD) — two congenital heart conditions.
It’s been a tough journey for little Charlotte, a saga of hospital visits and health complications since she was only 10 days old.
Lindsay teBogt, Charlotte’s mother, said they figured something was wrong after she started vomiting consistently — but they didn’t know why it was happening.
“It’s funny because the first week we had her, she was the healthiest baby and Ben and I kind of joked about how simple it was,” Lindsay said, shaking her head. “Her brother Jack was healthy, but a little more hands on. She slept well, fed well, and was always happy. We thought, ‘Oh, this is easy.’”
That didn’t last for very long.
Soon the vomiting began, and her happy demeanour turned sour.
Something was clearly wrong.
They went to the emergency room, where they met with a pediatrician, who suggested she may have a severe reflex and potentially a milk protein allergy.
After several return trips to the ER, and a few tests, the teBogt's found out on her four-week checkup that Charlotte had a heart murmur right before Christmas 2018.
They booked an appointment at the cardiology unit at the IWK for more tests right away.
It was supposed to be a couple hours of more testing and then back home to the family farm in Grand Pré, but they weren’t able to leave that soon because Charlotte had emergency surgery on her heart the next day.
That hit Lindsay hard.
“I went in and out of shock that day,” Lindsay said. “I don’t really remember much from that night.”
She asked the physicians how long Charlotte could have lived without the surgery, and they said she could have been gone the next day or the next week in her condition.
“I just don’t think I really wanted to hear that,” she said.
The young couple just wanted to know that their daughter was going to be OK.
Luckily, she was.
LONG ROAD AHEAD
They repaired her coarctation of the aorta, but decided to wait to fix the VSD until after she gained weight.
Charlotte had to stay in the pediatric intensive care unit at the IWK for several days because she had reduced heart function — likely because her heart was compensating from the previous defects.
They were home by New Year's Day and had a late Christmas once back home.
But some problems returned.
She had difficulty feeding, and wasn’t gaining weight.
They went back to the IWK for more tests.
She was admitted for a night, but ended up staying for three weeks.
Charlotte required a feeding tube to help her gain weight.
She finally had her second heart surgery on April 25, repairing the VSD — a hole in her heart.
They were hoping to do the procedure sooner, Lindsay said, but Charlotte kept getting sick, which delayed things.
“It’s been a long road,” Lindsay says quietly, feeding her daughter in her kitchen, occasionally looking down at her with big silly faces that moms make with their kids.
“We had a lot of help from our family, we simply couldn’t have done this without them,” she said. “(Charlotte) is a full-time 24 hours a day job herself, let alone another one, too, and a farm to run.”
Charlotte’s big brother, two-year-old Jack teBogt, plays with some toy trucks and tractors on the kitchen table.
When asked if he’s happy to have his sister home, he says “yeah,” shyly.
Lindsay says one of the hardest aspects of the whole ordeal was being away from her son for extended periods of time.
But luckily both sets of grandparents were able to step up to the plate and make it work.
There were constant trips back and forth to the IWK. It was a whirlwind of visits and broken schedules and compromises, but they made it work.
“Before she goes into surgery, you don’t really know what to say when you hand her off to the nurses,” Lindsay said, her voice cracking.
“So you say ‘see you later,’ and you just have to pray and hope for the best," she said.
“It’s hard to picture her lying there on the table, so exposed."
BRIGHT FUTURE AHEAD
The family lives at the Menkhorst Farm, which produces dairy and poultry products.
Their property is snuggled amongst the picturesque rolling hills that make the Valley a fitting scene for a postcard.
The couple knows they wouldn’t have been able to do everything they needed to do without the tremendous support of their family and friends.
Jeanette Parnell, Lindsay’s mother, was one of four grandparents that had to put their parenting hats back on to look after Jack while Charlotte, Lindsay and Ben were travelling back and forth at the IWK.
“They’ve been through a lot as a couple with this,” Parnell said.
“It can hurt a lot of couples," she said. “But they’ve managed to do it.”
Lindsay adds, “we really had to work as a team.”
Now, after months of stress and fear, Charlotte is mostly on the mend. Her heart functions aren’t perfect yet, and they’ll likely be visiting doctors for the rest of her life, albeit in shorter intervals over time, but she’s giggling and playing again.
“Since her second surgery, she’s just been so happy, it’s like having a brand new baby,” Ben said, smiling.
“We’re starting eating habits, sleeping, and all of those routines all over again,” Lindsay added.
If things continue to progress as they are, doctors say Charlotte should have a full life without restrictions.
“She might not be able to be an intense bodybuilder or something like that,” Ben said. “But she can still be active.”
Charlotte won’t remember how close she came, but she’ll have the scars to prove it.
“I’m just so grateful; our family isn’t complete without her,” Lindsay said. “It is now.”
“They didn’t just save her, they gave me my life back, too,” she said. “I don’t know if I could have handled a different outcome. I just can’t thank them enough.”
DID YOU KNOW?
Charlotte was one of the many IWK patients from across the Maritimes whose stories were selected to be featured on the 35th IWK Telethon for Children on CTV on June 1 and 2.
Donations to the Telethon will help support the most urgent priority needs of the IWK Health Centre and can be made by calling 1-800-595-2266, or online at www.iwkfoundation.org. Donations directly support priority equipment and fund programs, research and new facilities at the IWK.