By Becky Mann
Miranda Brown had just given birth to twins. Exhausted and thrilled, Brown was finally able to rest, her boys adjusting to life on the outside.
After a checkover from the paediatrician, baby Henry was whisked away following the detection of a small heart murmur — the mood in the room changed.
Henry’s blood was mixing and Brown had no idea what that meant.
“Can he die?” she asked; the answer was yes.
Henry was born with Tetralogy of Fallot, a condition encompassing a range of abnormalities in the heart. For Henry this included having a hole between the left and right ventricles, which essentially results in some deoxygenated blood by-passing the lungs for oxygenation.
In addition, Henry lacked a properly functioning pulmonary artery. The only thing keeping him alive until a corrective surgery could be performed was a drug used to keep his blood sufficiently oxygenated.
Henry spent a month in B.C.Children’s Hospital (the first time). The Browns' world was turned upside down as they were ill-prepared for the length of stay and needed to arrange care for their eight other children.
With their lives in disorder, their newborn son underwent open heart surgery — a three-and-a-half-hour procedure to secure a shunt.
The surgery wouldn't be a permanent fix, but a temporary procedure to buy him some time until a subsequent surgery, where an artificial pulmonary artery would be placed.
As Henry struggled, with countless visits to the ER, his twin bother Seamus was surpassing him developmentally.
Fortunately the surgery to replace his artery was successful, and Henry is now a happy and normal two-year-old boy; however, his heart problems will be with him for life.
The artery will last anywhere from 12 months to three years according to Brown, when after outgrowing it, Henry will need to have it replaced.
“We’ve had lots of complications from the open heart surgeries,” said Brown.
Henry receives nutrients via a feeding tube, he vomits multiples times a day and is constantly in and out of hospital.
But he is lucky to be alive.
While in hospital (on one of many occasions) with Henry, Brown met Sara Sundholm.
Sundholm was with her son Jacob, who was born with a condition where his pulmonary veins were not properly attached to the left side of his heart.
Brown recognized the distress in Sara’s face and offered her support.
At a week old, Jacob was ready to be discharged for jaundice from Royal Inland Hospital, but a nurse on duty noticed his oxygen saturation levels were low.
As luck would have it, B.C. Children’s Hospital staff were on site, running a clinic for cardiac patients. After a bought of tests, concentrating on his heart’s activity, it was decided that Jacob would need to be flown to B.C. Children’s Hospital immediately.
“He would have probably lasted the rest of the month and then he would have passed away,” said Sundholm.
At B.C. Children’s Hospital, Jacob underwent surgery at just 11 days old.
His mother had no idea how her son’s life, and her own life, would change following his diagnosis.
One out of 100 every babies born has a heart defect, according to the Children’s Heart Network. And there are 35 types of known congenital heart defects.
Brown and Sundholm had little knowledge of heart defects and babies prior to their experiences. They hope to educate others about what could happen and offer a place to find support through their Facebook group: Heart Warriors of Kamloops (and surrounding areas).
“There’s a number of families in Kamloops with heart babies; we’ve just kind of gathered each other,” said Brown.
“There’s a whole new language that comes with this that your typical friends aren’t going to get,” said Brown, when discussing what her and her family go through on a daily basis.
Brown and Sundholm urge those with concerns to ask questions right from the start and do the research. Many problems can be identified during a routine ultrasound.
“There’s a lack of education in how common it is and how really important it is to screen for it,” said Sundholm.