Beneath the pleasant, normal life of the Heidt family, there lies a tiny scar on tender baby skin, memories of an airlift to BC Children’s Hospital and many days of turmoil.
To an outsider, there’s nothing to distinguish Terry and Allisha Heidt and their baby son Bing from every other family in their Kelowna community who have welcomed a new baby into the family. They’re just as sleep-deprived, just as busy, just as thrilled to see him grow and hear his daily squeals of delight.
Then every six weeks, real life shifts for Terry, Allisha and their close extended family.
“We’re lucky he can live a normal life, but then we have to go to Vancouver and we’re reminded that yes, this happened to him,” says Allisha.
What happened was mesoblastic nephroma, a renal mass, or kidney tumour so rare that it presents in eight in every million newborns. The diagnosis requires that the Heidts travel every six weeks from Kelowna to BC Children’s Hospital in Bing’s first year to monitor his progress and check for new growth.
The news of mesoblastic nephroma came within days of Bing’s birth on December 29, 2014. It was a shock to the Heidts, who had enjoyed Allisha’s calm, healthy pregnancy. Mesoblastic nephroma is often too small to see in early pregnancy ultrasounds or develops in the late weeks of pregnancy.
The lives of new parents are always up-ended with the arrival of a baby. But when the baby suffers from medical complexities, it’s a huge blow for new families’ expectations and their long-held vision of what life with a baby would be like, says Dr. Amanda Li, a BC Children’s Hospital oncology fellow who treated Bing, along with Dr. Jeffrey Davis.
They’re two members of a team dedicated to monitoring Bing during his first year. With Bing, and any infant who visits BC Children’s Hospital, the first year of life is critical in terms of health, motor and brain development; BC Children’s caregivers maintain communication with the family and are always attuned to their particular difficulties.
“The diagnosis of cancer is never expected and always stressful and overwhelming,” says Dr. Li. “To put that in the context of brand new parents who’ve just had their first baby and are from away, I can’t imagine how overwhelming it would be. And then to be told you have something medically wrong, [it’s even tougher].”
BC Children’s Hospital surgeon Dr. Sonia Butterworth led the surgery to remove Bing’s tumour. The wait for a diagnosis, during which Allisha couldn’t hold and nurse Bing, was particularly unpleasant, Allisha recalls.
Three weeks after they first arrived at BC Children’s, Bing was tumour-free. He and his parents were able to return to Kelowna and resume life as normal. Studies show that 98 per cent of newborns with mesoblastic nephroma do indeed survive and thrive.
“At BC Children’s Hospital, we may see a case of mesoblastic nephroma every year or less in our BC population,” says Dr. Jeffrey Davis, Bing’s oncologist. “This type of tumour is generally not metastatic [does not spread to other organs]. As long as the surgery is successful and the baby recovers well, things usually go well,” he says.
The Heidts also embrace the unexpected benefits that come with the rarity of mesoblastic nephroma. Where many parents facing a child’s health crisis might lose themselves in the storm of medical websites and blogs by parents and support groups, the random occurrence of mesoblastic nephroma in their son – and the swift removal of what turned out to be an isolated tumour – gave the Heidts a perverse advantage over many families dealing with a child in medical crisis.
With few online experts or families available to expound on this rare variety of nephroma, the Heidts say they were fortunate to escape the barrage of speculation and information on social media that so overwhelms families facing more common ailments. They accept the random nature that comes with a rare diagnosis, and find comfort in the fact that with the tumour gone, they don’t need to constantly obsess about health management. Rather, they’re free to enjoy their baby boy and take pleasure in his normal, healthy developmental milestones.
Allisha says the family’s optimism helped them cope through the most difficult times.
“We said no matter what news we heard, that when we stationed ourselves cribside for the day we wanted to emit only positive vibrations.”
Daily reminders to each other helped the couple move forward, Terry adds.
“Every morning when we were at Children's, Allisha and I said to each other, ‘It's going to be a good day.’ It helped us get through it all.”
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