A shrill alarm wakes Roxie Malone-Richards every day around 4 a.m., indicating the machine that feeds her daughter is out of food.

The machine pumps a mixture of milk and formula through a tube that runs into 7-month-old Jessie’s nostril, down her throat and into her stomach.

Until recently, she had tubes in both nostrils: the second was attached to a ventilator, which helped her breathe for the first five months of her life.

Now her mother, having spent most of her maternity leave in hospital with Jessie, is fighting for benefits for parents of premature babies.Born 3 1/2 months premature, and weighing one pound 7 ounces, Jessie was small enough to fit in an adult hand. As is typical of premature infants, she has a host of health complications, including chronic lung disease. And at 3 months, Jessie had cardiac arrest.

“That was the closest we came to losing her,” says Malone-Richards, 44. “They did CPR on her for over five minutes.”Malone-Richards has had to watch on several occasions as her baby turned purple from a sudden failure to breathe, and she struggled to contain her emotions while respiratory therapists rushed to her aid.Malone-Richards visited the Royal Alexandra Hospital and Stroller Children’s Hospital in Edmonton morning, noon and night, for five months, until Jessie was released when she could breathe on her own.

She has less time left with Jessie at home, before having to return to work as a radio producer. She says the benefits system discriminates against parents of premature babies by not covering the longer periods of time they spend in hospital.”The clock starts ticking once the child is born,” she says. “And I’m saying that’s not fair. By the time Jessie gets out of the hospital I’ve chewed up five months of my time.” She has launched a petition calling for the government to extend benefits for parents of premature newborns who require hospital care, so that maternity leave begins not at birth, but once the mother and child are released from hospital.

Under the Employment Insurance Act, parents who qualify receive 15 weeks of maternity benefits, and another 35 weeks of parental benefits, for a total of 50 weeks, whether the baby is healthy or ill. Parents who have paid into EI receive 55 per cent of their average wage, up to a maximum of $423 a week, less tax.

Another federal program, Compassionate Care, was introduced in 2004 to give eligible workers up to six weeks of additional benefits “if a family member becomes gravely ill.” Parents who are eligible for compassionate care, maternity, parental and sickness benefits could receive up to 71 weeks’ worth.
Not qualifying for sick leave, another program under EI, Malone-Richards is left with compassionate care. “But that’s only six weeks,” she says, and she was in hospital with Jessie for five months.

According to Statistics Canada, premature birth rates – births following fewer than 37 completed weeks of gestation – have been rising steadily since 2001. That year, 7.3 per cent of live births were premature. In 2004, that rose to 7.9 per cent, which means more Canadian families are spending more of their parental leave in hospital, and less of it at home.

Some have limited health-care plans or can take only a short amount of time off to stay in hospital with the newborn. That can have grave consequences for critically ill newborns, as parental presence can influence the chances of their survival.

Dr. Paul Byrne, neonatologist at Stollery Children’s Hospital, one of the doctors to treat Jessie, says Malone-Richards “had a great deal to do with the survival of her child.” First, she was a “strong advocate” for her, carefully monitoring clinical procedures, and asking for detailed explanations whenever anything was unclear.

Second, Malone-Richards practised “Kangaroo Care,” in which the baby is placed on the mother’s chest, skin on skin, for one or two hours, twice a day. It is a way of re-establishing a connection between the mother and her baby, and reproducing the sensations and sounds the baby had been used to in utero.

The chief of newborn and developmental pediatrics at Sunnybrook hospital in Toronto, Michael Dunn, says: “When they exit that cocoon early, their sensory systems are not developmentally at a stage that they are meant to be in this hostile, or harsh environment. And the parent can overcome some of those problems by being there.”

Newborns are reunited with the mother’s breathing rhythms, heartbeat and voice. “She would sit there, just stuck to me. We sat there like that for hours,” says Malone-Richards.

As a result, Jessie’s heart rate went down, and her blood pressure levelled out. Babies who have received Kangaroo Care have better temperature regulation and fewer pauses in their breathing. They also tend to exert less energy to get air into their lungs – a common problem for premature babies who often struggle for air.

Having failed in her appeal of EI’s decision to give her extended parental leave, Malone-Richards is campaigning to change the system for others. “When you are living with the stress that you’re living with having a sick child – and sometimes deathly ill – to have this big black cloud hanging over your head that the clock is ticking on her, every day that I’m in there is one less day that I get when she’s on the outside. I don’t want that to happen to anybody else.”

Dunn has helped parents by finding ways of “getting around” their obligation to return to work, often by writing letters requesting extra time off from employers. But success is patchy, and he wants to see a standardized solution.

“I think it would be nice to have it somehow built into legislation that your maternity leave begins from the time your baby is born but is extended by the period of time that is equal to the baby’s hospitalization. I think it’s a simple formula, and it would be easy enough to do.”

A spokesman for the federal human resources department said such changes would require an act of Parliament. Malone-Richards’s petition is being circulated, and hundreds are being signed and returned from all over Canada. She has the support of Edmonton MP Peter Goldring, who is to present the petition to the House of Commons in February.

A growing number of mothers are on board. Shannon Moroz, 29, also of Edmonton, met Malone-Richards while in hospital with her 4-month-old daughter. Maya was born with a number of heart defects, and her eyelids, feet and hands turn blue when her heart fails to pump enough oxygenized blood through her body.

Moroz sees the time in hospital with Maya as “lost.”
“You don’t get that time at home. All the moms with healthy babies, they get from the minute their baby is born, that time until the year is up with maternity benefits.”

When Malone-Richards returns to work in July, she will have to leave her daughter in daycare, where exposure to germs could cause a cold, which in Jessie’s case could be fatal.

Before giving birth to Jessie at 43, Malone-Richards had three miscarriages, the latest in a long line of her own health problems. Having grown up with spina bifida, a neural tube disorder in which vertebrae are disconnected, she had had more than a dozen operations, and used crutches until she was 12.

Her mother ignored doctors’ warnings that she would never walk. Perhaps in a similar way, Malone-Richards refuses to accept current legislation as the final word on parental leave. “My mom is really strong and she’s given me strength,” she says.

“And little did I know that later on in my life, I was going to need that strength. So I think I’ve really passed it on to Jessie as well, because this kid’s a fighter too.”

To obtain a copy of Roxie Malone-Richards’ petition, email Roxie01@telus.net

This was an original report for the Toronto Star.