Joshua Taekema was awakening after his third surgery, at just five months of age, when he looked up at the nurse tending to him and gave her a precious smile before drifting back to sleep.
The gesture is indicative of Joshua’s calm and happy nature, despite a short life filled with medical interventions and extended hospital stays.
Today (Wednesday), the Abbotsford infant is scheduled for his fourth operation – open-heart surgery in which he will receive a donor artery to replace 90 per cent of his damaged one.
Joshua was diagnosed shortly after his birth on Oct. 18, 2013, with tetralogy of fallot, a congenital heart defect which can lead to heart failure if not repaired.
Joshua’s mom, Rachel Gammon (in photo below with Joshua), says the baby’s heart is turned in his chest so that it faces the left side of his torso. He has an aorta that lies over the pulmonary valve, instead of under it, and then passes between the chambers.
This results in oxygen-poor blood flowing out of the heart and to the rest of the body.
As a consequence, Joshua has shortness of breath, weakness, fatigue and occasional “tet spells” in which his skin turns blue due to a rapid drop of oxygen in his body. He has also been unable to gain sufficient weight. At almost a year old, he is about 13 and a half pounds – the size of an average three-month-old baby – and is not yet crawling or sitting up on his own.
Rachel and her partner, Andrew Taekema, although obviously worried about today’s procedure, remain optimistic and look forward to the changes it will bring to Joshua’s life.
“We have confidence in the doctors,” Andrew said.
The parents did not know of Joshua’s condition until after his birth. He arrived in the world holding his breath and his skin a deep-purple tone. However, he soon seemed to be OK and was sent home on schedule.
But the baby did not eat well and was sleeping constantly. Then an episode in which he turned a deathly greyish-blue colour sent Rachel and Andrew scurrying to the doctor.
They had not seen anything like this with any of the other five children in their blended family. (They each have two children from previous relationships, as well as two together.)
A pediatric cardiologist who listened to Joshua’s heart instructed the couple to admit him as soon as possible to BC Children’s Hospital, where his diagnosis was almost immediate.
“Your chest burns. It’s the weirdest feeling. It’s this terrible feeling of dread … That day was such a blur,” Rachel says of the diagnosis.
Joshua’s first surgery – to insert a shunt in his pulmonary artery that would allow for better blood flow from his heart – was performed when he was just 10 days old.
The family tried to prepare for what could have been a tragic outcome, and all Joshua’s siblings came to the hospital to say their goodbyes.
“As a couple, we actually had to prepare ourselves not to bring him home,” Andrew says.
The operation went well, but complications four days later resulted in Joshua’s bowel rupturing and him requiring emergency surgery in which two-thirds of his bowel was removed.
Joshua spent several more weeks in hospital, including treatment for an infection that developed.
He was sent home, but has been in and out of hospital numerous times since. Andrew describes the trauma of having an ambulance take Joshua from their home as the baby’s five siblings – two aged 9, and the others aged 12, 11 and 2 – stand at the window and cry.
“We can never promise them that he (Joshua) is going to be OK,” Andrew says.
Joshua required a third surgery in March to attach his small intestine to his large one and to insert a feeding tube.
Through it all, Joshua has persevered.
“He’s almost always smiling or happy. He’s probably our easiest kid, personality-wise. He’s not a fussy baby,” Rachel says.
He will require another heart operation in anywhere from three to 15 years, Rachel says.
Meanwhile, the family has faced not only the emotional toll of having a sick child, but the financial burden. Joshua’s medical appointments and hospital stays in Vancouver have resulted in expenses such as gas, bridge tolls, parking and hotel stays.
Andrew, a carpenter and bridge worker, has been unable to work due to his own health problems – gastrointestinal issues and a neurological condition that results in blackouts and vomiting – and hasn’t yet been approved for government disability payments.
Rachel has been unable to work due to Joshua’s health issues. The family has been living on social assistance and had set up an online fundraiser that they shut down last week after half the donated funds were taken from their bank account, possibly by a computer hacker.
They were also the victims of a recent break-in where the thieves stole cash and several gift cards that had been donated to them. Anyone who would now like to donate to the family is asked to email them at email@example.com for details.
UPDATE ON WEDNESDAY, SEPT. 10 AT 2:15 P.M.: The surgery went well and Joshua did not need an arterial placement, after all, because it wasn’t as bad as it had looked in previous testing.
(Photo below: Joshua plays with dad Andrew and big sister Jayda, 9.)