'DON'T CODDLE HIM'... HE COULD BE A NORMAL LITTLE BOY
KAMLOOPS —The day Sara and Justin Sundholm were supposed to bring their week-old baby home, they learned they instead had to fly to B.C. Children's Hospital because of a potentially life-threatening defect.
While Jacob is now at home and appears to be doing remarkably well following open heart surgery five weeks ago, the scars mottling his tiny body will forever be reminders of how his life started.
Born at home on Jan. 10, just a couple weeks early and after only three hours of labour, he appeared to be a healthy, happy little boy with just a bit of jaundice. After just a day in hospital Sara and Jacob were released from Royal Inland Hospital, though they had to return to the following week for light therapy when Jacob's colour didn't improve much.
When back at the hospital the nurses and doctor continued to get alarmingly low oxygen readings, the provincial cardiac team, which just happened to be in Kamloops that day, was asked to take a look.
Then everything turned upside down for the young family.
The cardiac team did several tests and found he had congenital heart disease (total anomalous pulmonary venous connection) that required separating his artery from itself and attaching it to his heart so oxygen could flow properly. By the end of the day, mom and baby were flown to Vancouver to prepare for open heart surgery.
Dad and sons Gavin, 4, and Karson, 11 months, soon followed and while they spent nearly three weeks in Vancouver as Jacob battled several issues following his seven-hour heart surgery his older brothers were unable to visit the hospital because they both fought colds.
While Justin and his sister tried to keep the kids entertained at the hotel, Jacob developed pulmonary hypertension and doctors had to leave his sternum open for four extra days, during which time he was on paralyzing medicine to keep him from moving.
“It was pretty terrifying,” Sara says. “You can't hold them, can't do anything.... We were getting ready to leave when his heart started beating really quickly. It was pretty scary.”
Jacob will now be on medications for 'quite some time' and there will also be monthly doctors appointments and tests for the first year, and perhaps longer, but as long as scar tissue doesn't develop on his heart he shouldn't need any more surgeries. As Jacob gets older and stronger Sara says they have been told he could be a normal little boy.
“I was told 'don't coddle him... he could be a normal little boy,'” she says. “But it's hard... the hypertension is the most worrisome.”
Jacob's sternum was wired shut. Bone will grow over it and the scar will become much less noticeable. Currently a large scar where they performed the surgery, several scars from drainage tubing and marks from where they had to use paddles to start his heart again are all very visible. They worry about hurting him but rules are in place to keep his sternum, heart and incision sites safe.
“Gavin loves him so much.... He tells everyone 'You can't touch Jacob until you wash your hands,'” she says of her eldest. “But Karson doesn't really know what (Jacob) is yet.”
TIME FOR CALM
Sara notes they got lucky in finding the defect. Because Jacob had a small hole in his heart, as many babies do, it was able to circulate oxygen where it was needed. She says if he hadn't needed light therapy and gone to the hospital for his jaundice, they likely wouldn't have found out he had a heart problem until he lost weight or turned blue from lack of oxygen.
“We're done, we need calm time now,” Sara says. Now bound to their home, they try to keep Jacob protected from colds and flus. “Little things can get him sick.”
They know Jacob will have questions about his scar when he gets older so they've started keeping notes and pictures so it will be easier to tell him his story.
The Sundholms don't have much family in Kamloops but Justin's sister spent a lot of time in both Vancouver and Kamloops helping—a welcome relief since friends rarely visited.
“There haven't been a lot of visitors,” Sara says. “It's respect, but also some fear.”
That doesn't mean people haven't been helping out though. Members of her congregation have stopped by with gifts and donations and a friend set up a Go Fund Me page to help cover costs incurred in Vancouver and lost wages.
Sara says Justin's workplace is understanding as well, even though he has worked there less than six months, and while they face travel throughout B.C. for monthly testing.
“We'll figure that out as we go,” she says, adding they'll do whatever they need for their “little heart warrior.”
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