HOSPITAL MOM
Taylum was born 18 months ago with advanced kidney disease. Since then, his mother, Désirée Lamoureux, has barely spent a day away from hospital,
Désirée Lamoureux was six weeks from her due date with her first child when she got the call summoning her to the obstetrician’s office.
Be at the hospital by 6 a.m. tomorrow, he told the Sudbury high school teacher, who had come straight from her classroom. An ultrasound revealed she had no more amniotic fluid to nourish the baby and its kidneys were enlarged. She would need a caesarean section.
Four hundred kilometres away in Toronto, Désirée’s best friend Rachelle Larose was finishing her shift as an operating room nurse.
She was the second person Désirée called in hysterics, right after her husband Darren. Rachelle jumped in the car and drove the four hours to Sudbury.
Hours after Taylum Devin Lamoureux was born on April10, 2013, he was airlifted to Sick Kids Hospital in Toronto. Darren Lamoureux followed in the car.
And two days after her C-section, Désirée climbed into Rachelle’s passenger seat as her friend drove seven hours through a freak snowstorm to get her to her baby’s side. She’s been there ever since.
7:55 a.m. Désirée sits cross-legged on the floor holding a mascara wand. Her coffee mug is perched on a storybook she uses as makeshift tray.
Beside her, 18-month-old Taylum swipes a case of eyeshadow from her basket and races away on all fours through the toys strewn across the floor.
Cookie Monster rasps from the televi- sion and across the room the fridge is plastered with wedding and baby photos. A pot of basil sits in the windowsill.
Atypical household morning scene. Except it’s not.
Taylum has no kidneys. To survive, he must be hooked to a hemodialysis machine six mornings a week as it draws every drop of blood from his body and filters out toxins before pumping it back into his heart.
And this second-floor apartment is not home. It’s Ronald McDonald House Toronto, a place for families of seriously ill children who come from far away to get life-saving medical treatment.
It’s four hours from his parents’ house in Chelmsford on the outskirts of Sudbury and the only home Taylum has ever known.
The toddler’s journey is as unique as his name, dreamed up by Désirée and a girlfriend in their high school days. He has defied predictions since the day he was born six weeks premature with advanced kidney disease.
Only one in four babies with his condition survive; he wasn’t expected to live more than a week.
“I remember feeling like I didn’t want to fall in love with him because I was so afraid he was going to die,” Désirée says. But of course she did, the first second she laid eyes on him, kissing his belly and inhaling his scent.
Since then, Taylum has endured seven surgeries and more than 1,000 hours of hemodialysis.
He spent his first seven months in Sick Kids in neonatal intensive care and then on the nephrology ward. Now he is waiting to grow big enough to receive a kidney transplant.
Désirée, 32, has rarely left his side and has spent only a handful of days away from hospital. They live in the outdoors, down the road from a deer farm. But these days her life is confined to a small concrete section of downtown Toronto.
Darren, a 36-year-old electrician, drives to Toronto every couple of weeks to spend four or five days with his wife and only child. But he has to keep working. They need the income and the extended health insurance plan.
Outside the apartment window, yellow poplar leaves waft to the ground. Désirée has watched this tree over four seasons from this window. Soon its branches will be bare again. And she can’t predict how many more seasons she will see here.
Just before 8:30, she grabs her coat, tosses blocks and board books into bins. Time for the daily walk to the hospital.
Taylum has other ideas. He pulls himself up and cruises along the dresser, then drops to his knees and crawls lickety-split to the bedroom, pushing the door shut.
Laughing, she wrestles him into the stroller for the 15-minute journey they have made more than 300 times. 10:05 a.m. Taylum sits on a cot at Sick Kids surrounded by female fans. He indulges them like a good-natured rock star, bestowing a snuggle here, a beaming smile there.
His ankles are crossed, his onesie unsnapped so the blood lines from the hemodialysis machine can be attached to the central venous line that travels into his chest and up to his neck before making a U-turn down to his heart.
The treatment doesn’t hurt. But it takes teamwork to keep a lively toddler busy and immobile for an entire morning six days a week.
Today the team includes his mother, one of his regular nurses and a hospital speech therapist. And a special treat: Rachelle. When Taylum spots “Rara” from his stroller, his arms and legs start pumping with excitement.
Other than Darren, Rachelle is the only person Désirée trusts to look after her son. She’s been there through the family’s most painful and triumphant moments: Taylum’s diagnosis with autosomal recessive polycystic kidney disease (ARPKD), which causes fluid-filled cysts that lead to chronic kidney failure; his surgery, at 5 weeks old, to remove the left kidney that was crushing other organs; his baptism in an Isolette the night before; and his rebound in the face of physicians who gently suggested Désirée and Darren explore palliative care.
She was there when, at10 weeks, his remaining kidney had to be removed and he began daily dialysis.
“We’re like sisters,” says Désirée. “I don’t know what I would do without her.”
It takes 2- 1⁄2- hours for the 700 millilitres of blood in Taylum’s body to wind its way through the hemodialysis circuit. As he flips the pages of a Peekaboo board book, a stainless steel machine the size of a small refrigerator — in essence, a giant kidney — hums beside his cot. It pumps blood from his heart through tubes that filter it and run it through a bath of dialysate fluid that removes toxins, potassium, phosphate and sodium along with excess fluid. The “cleaned” blood then winds its way back into his heart.
Getting the balance right is a complex and evolving process. Removing too much fluid will make him “dry” and irritable. Not enough can lead to complications like fluid on the lungs. Lines need to be primed and constantly watched in case of clotting.
“At first I hated coming here, I was crying all the time,” says Désirée. “I don’t like blood and it takes a lot to see your child’s blood like this.”
Now she watches Taylum’s blood pressure and heart rate with an eagle eye, explains the pH level of the bath that cleans his blood, and reminds the nurse to change the cap on his central line.
She cleans the surgically implanted port that attaches to Taylum’s feeding tube and injects him with growth hormone every day.
There are other indications of the alternate reality she inhabits.
“You know you’re a hospital mom when you cut your own hair with suture scissors,” she says.
Or when you use strips of elastic gauze netting to tie your hair. And your baby plays with plastic syringe barrels and chews the strings of surgical masks when he’s teething — two of Taylum’s favourite pastimes.
She’s also developed a forensic scientist’s powers of detection when it comes to germs, opening doors with her elbows and pushing elevator buttons with the top of a knuckle. Taylum doesn’t play with communal toys. She can’t bear the thought of another admission to hospital.
Mother and baby are locked in the rhythm of their world. But she counts the minutes until Darren arrives for his visits. When the familiar chime of Skype signals his face on the screen, Taylum starts babbling “Dadda Dadda.”
Désirée would do anything for her baby. But she can’t do the one thing he needs most — give him one of her kidneys. She was diagnosed with a heart condition at 17. Her older brother Devin had a heart transplant as a young adult and died 10 years later at 32. She was still grieving when she gave birth to Taylum Devin, named for him.
They are desperately hoping Darren will be able to donate one of his kidneys. But first Taylum has to get big enough to accommodate an adult organ. He’s not far from the target of 22 pounds and 80 centimetres long. 1:30 p.m. Désirée and Rachel are on the couch in the apartment at Ronald McDonald House. The baby monitor between them shows Taylum sleeping in the bedroom. It’s the first time Désirée has sat down since applying her makeup.
Rachelle flips open her iPad and launches the 20-minute video she made for Taylum’s first birthday party, held in Sudbury last April. It was the first of two brief visits home that Taylum and his mother have made, and Désirée’s first time on an airplane. “Everybody missed his first year,” says Rachelle. “I wanted to be able to share it.” There are photos of tiny Taylum, swaddled and plugged into tubes and monitors, the hospital tape on his cheek cut in the shape of a heart. There is the “Happy First Week” sign Rachelle made and later, his first day outside in the stroller at four months old. Snapshots of him being cuddled by grandparents, other relatives and friends visiting from Sudbury. As the two women sit side by side listening to the lyrics of the Journey song “Don’t Stop Believing,” tears slip from the corners of their eyes. Désirée’s plunge into motherhood was nothing she could have expected. She was primed for joy, but she got trauma. She can’t say enough about the kindness of everyone at Sick Kids. But many memories of the surreal early months are still painful. “The day he was born, I was put in a different world,” she says. “I have a hard time thinking back.” At Ronald McDonald House, there’s an unspoken camaraderie among parents facing their worst fears. But even surrounded by compassionate people, “it can be super lonely.” Social media is both a blessing and curse. She and Darren clung to blogs by two American parents of babies with the same kidney disease who went on to have successful transplants. She joined online groups for “kidney moms,” and medical supply exchanges. But scrolling through Facebook and that foreign world of healthy babies and normal milestones can be excruciating. “The things I worry about are things my friends have never even heard of,” she says. “I feel like I still have open wounds.” 5:25 p.m. Taylum is hollering, his first squawk of the day. He’s pinched his fingers while dismantling the Tupperware cupboard. The commotion lasts about 15 seconds, until Désirée plops him down with crayons and paper. Taylum has always been calm and smiley, a charmer who wakes up cheerful. In the rare event that he’s up ahead of Désirée, he pulls himself to his feet and shouts “Hihihihi!” It’s his favourite greeting as he motors down the second-floor hallway on palms and knees, or as his mom pushes the stroller through Kensington Market to the park with the baby swing. His infectious smile will kick off a 42-day Sick Kids campaign on Monday that features television spots of a different pediatric patient or staff member every day. As he scribbles, Désirée prepares the dinner that will drip through his feeding tube as he sleeps. Today is a blended mix of mango, apple, vegetables, pork, rice, rice milk and flax seed and hemp seed oils; everything is strictly organic and meticulously calculated by volume and calories. He eats only tiny amounts by mouth — a couple of ounces of concentrated formula from his bottle, a little strawberry yogurt or rice crackers.
She’s been so busy looking after Taylum’s regimen today that she neglected to feed herself.
Her supper will come from downstairs, courtesy of the “Home for Dinner” program, which provides free meals prepared by volunteers for everyone staying at “The House.”
Money is not the most important thing. But it is a constant source of stress, with only one income coming in.
Accommodation is $15 a night and there are the costs of Darren’s travel back and forth. Taylum’s feeding tube isn’t fully covered and neither is the growth hormone his mother injects daily into his thigh or arm to strengthen him for the future transplant. At $4,300 a year, it’s “liquid gold.”
Their community has been generous and Désirée says “words could not express” their gratitude. A fundraising page set up by a friend raised $9,000.
Groups in Sudbury have held events and campaigns to raise money. The Superman quilt folded on the couch was a gift from a stranger; a Toronto salon treated her to a cut and highlights. 7:15 p.m. Taylum lies naked against pillows covered in fuzzy towels, chewing the string of a surgical mask. The apartment is dim and his eyes are fixed on the Wiggles as they dance across the television screen.
Désirée dunks a face cloth in a bowl of water bubbly with castile soap and squeezes the drops out over her baby’s thighs, wiping gently. A large bandage on his chest covers the central line that runs up to his heart and, below it, the catheter dangles at his side.
Désirée wipes and places a new square of gauze underneath his feeding tube port, attaching it with hospital tape.
They say parenting is a 24/7 job. For Désirée, that’s no exaggeration.
After Taylum is tucked in his crib beside her bed, she’ll still be on alert, checking him all night to make sure he hasn’t dislodged his line or wrapped himself in the feeding tube that stretches to the side of the crib where the feeding bag hangs, fastened with one of her giant hair clips.
Her day isn’t over until midnight. There is formula and food to prepare for tomorrow. Taylum’s dinner takes three hours to run through his feeding tube. Then he needs an hour off before she can start the formula that will drip into him all night.
“If I feel myself falling asleep I run around and turn all the lights on,” she says.
She will sustain this as long as she has to. But she tries not to get her hopes up when it comes to planning. After transplant, they will need to stay in Toronto at least three months.
Outside, the CN Tower glows in the distance and a gauzy half moon rises in the sky.
In seven hours, Désirée’s phone will start beeping, the signal that it’s time for her to do it all over again.