The courage of Chris and Tanya

Source: Best Health Magazine, December 2011

It’s a rainy morning in the fall of 2010 in the Vancouver suburb of Port Moody. Inside the Kirby residence, all is cozy and calm. Their twin girls are gurgling on the couch, and first-born daughter, Morgan, is making playdough creatures at the kitchen table. Lucky, the dog, is sleeping by the bay windows that reveal a green lawn and bright flowers.

Tanya, an occupational therapist on maternity leave, is still in her pyjamas, but Chris is dressed. A steel salesperson, he is off work for a few more weeks so he can help out at home and recover from his surgery. He sits now at the family dining table, the red tip of the scar from his recent heart transplant peeking out of the top of his white shirt.

Both Tanya and Chris look tired yet radiant’like any normal parents to three small children. But normal doesn’t apply to the Kirbys. What they have been through is a story of courage, determination and strength.

Just three months earlier, Tanya was 37 weeks pregnant and undergoing a Caesarean section for her twin girls at St. Paul’s Hospital. Chris was in the operating room watching his daughters being born. He had been wheeled there from his own room down the hall, where he’d been recovering from heart transplant surgery’only one week earlier, he’d been told there was a heart for him, which he’d been waiting a year and a half for.

The Kirbys hadn’t yet confirmed whether the twins, Teagan and Mackenzie, carried the gene for the heart condition’called hypertrophic cardiomyopathy’that had plagued Chris for most of his adult life. ‘But Chris and Tanya weren’t worried; they had done what they could to ensure the erasure of this genetic condition from the family line.

Pre-implantation genetic diagnosis

Tanya and Chris are one of a growing number of couples who have used a groundbreaking technology called pre-implantation genetic diagnosis. PGD allows couples who know they carry the genes for life-threatening conditions such as Huntington’s, cystic fibrosis and muscular dystrophy to have healthy babies.

PGD uses the regular IVF process to fertilize eggs from a woman’s body and grow embryos. What happens next is incredible: In the lab, a single cell is extracted from each embryo’a process that does no harm’and that cell is tested for the presence of the abnormal gene. If it’s negative, the embryo is transferred into the woman’s uterus.

It’s the same process that’s permitted in some countries, such as the U.S., to allow parents to choose the sex of their baby. But in Canada, PGD can be used only in the case of potentially life-threatening genetic conditions, such as Chris’s.

‘If you want a blond, blue-eyed male infant, we don’t do that,’ says Dr. Al Yuzpe, clinical co-director and co-founder of Vancouver’s Genesis Fertility Centre, one of the few clinics offering PGD in Canada. ‘What we do is eliminate the transmission of a serious or fatal disease from a family line.’

At Genesis, the pregnancy rate is 63 percent per embryo transfer. Just as in regular IVF, says Yuzpe, pregnancy isn’t guaranteed; there’s an increased chance of pregnancy if the woman is under 35. But at Genesis, there is, so far, a remarkable 100 percent chance that the embryo will be born healthy if it was subjected to PGD.

It’s a process that can help couples who might otherwise be forced to make a terrible choice: Either don’t take the risk of having their own biological children; or do get pregnant and then rely on an amniocentesis, which can only be done in the second trimester, and if the baby carries the gene, face the decision to abort or continue the pregnancy.

Yuzpe recalls one couple who’d had a child with muscular dystrophy. They were stressed emotionally and financially, but wanted to have children who were free of the disease. The problem was, PGD costs between $13,000 and $16,000.
‘PGD is not publicly funded in B.C.,’ says Tanya. ‘Neither is IVF. But both should be. It’s nuts that women who can’t afford PGD face choosing abortion since they don’t know if their baby has the gene. It makes me so angry. What kind of choice is that?’

The best decision they ever made

The reason for Tanya’s passionate stance on PGD is now tucked into one arm: Teagan, one of her two gorgeous’and healthy’baby girls, is smiling up at her. Mackenzie is lying on Chris’s chest. They feel PGD was the best decision they ever made. Not wealthy, the couple used their savings and went into debt to have their healthy twins. But it is, they say, a small price to pay to have children who will be free of the suffering Chris has endured, and for a lifetime of not having to worry. (They are not yet aware whether or not Morgan has the gene.)

‘Even now that I’m in my 30s,’ says Chris, ‘my parents still worry about me.’ It’s easy to see why. When he was 18, Chris had a cardiac arrest while biking to work, which was how he discovered he had this condition. He was saved by a passerby who performed CPR on him for 45 minutes until the ambulance arrived. That same year, he had open-heart surgery to treat his condition. Since then, his life has been ruled by medical tests and medication with side effects that have included serious fatigue and dizziness.

It wasn’t until the summer of 2008, when Morgan was one year old, that things really crashed. A former marathon runner, Chris was playing beach volleyball with Tanya when he began to feel sick. He thought he was just dehydrated from a boozy weekend of whitewater rafting with his buddies. But when Tanya saw him crawling back to the court from the car, where he’d gone to get some water, she knew it was serious.

She drove him to hospital, where doctors discovered that the internal defibrillator he’d had since 2001 had detected an irregular heartbeat’and had shocked him 11 times in just one hour. They called it an electrical storm, and he was in hospital for a week. When he went home, it was only for one night: While watching a movie with Tanya, his defibrillator struck again. When the ambulance came, he pleaded with the attendants to knock him out. He just couldn’t handle any more shocks. In hospital, the idea of a transplant was floated.

Even though a very small number of people with hypertrophic cardiomyopathy require a transplant (and some never show clinical symptoms), Chris’s health was going downhill quickly, despite his active lifestyle.

‘We didn’t know how long we’d have to wait for a transplant,’ Chris says, ‘and we didn’t want to slow down on our life goals. ‘We wanted more kids, regardless.’

According to Tanya: ‘We decided everything was going to be fine, so let’s get on with it.’ They had heard about PGD from a genetic counsellor and, after many private discussions about the cost, the ethics and the process, they decided to do it.

‘I didn’t ever want to see my kids going through what Chris has gone through,’ says Tanya. ‘And I couldn’t imagine throwing caution to the wind, because for us there is a 50-50 chance that the gene will pass on. That was too much of a serious risk when there was an opportunity to have children who would be free of it.’

A long process

The process of getting pregnant was physically more challenging for Tanya than she had anticipated. After a month of tests and injecting herself with hormones twice a day’all the things that go with IVF’she was a wreck. Yet she still had to function at work, mother Morgan and care for Chris. He now needed regular naps, a special diet and constant medical management.

On top of it all, that first round of IVF with PGD, which can cost up to $16,000, didn’t work. Tanya, by then 31, was so disappointed, and wasn’t sure she had the strength, let alone the money, to try again. At a follow-up appointment six weeks later, Yuzpe let them know a second cycle wouldn’t cost as much as the first. Tanya says that, while that was good news, ‘thousands of dollars is still a lot of money for us.’

But they decided they weren’t going to let money stand between them and a healthy child. So they tried again. This time, the IVF with PGD worked. The embryos were tested and were clear of the disease, and doctors implanted two into Tanya.

Ongoing recovery

The Kirby twins were born on June 28, 2010, a week after their father’s life had been saved by an anonymous organ donor. Chris was released from hospital first, but once they were all back home, of course, neither he nor Tanya got the rest they needed. With two newborns to feed and change, and a toddler who needed extra love and attention, there weren’t many opportunities to relax, even with the help offered by friends and family.

‘It hasn’t been the standard heart surgery recovery,’ says Tanya. ‘Right out of the gate, we were taking care of babies.’ But they are all better than ever. Although Chris’s recovery is ongoing, he’s now more able to participate in family life than before his transplant, when fatigue made it hard to even help around the house. He gets up at night to help Tanya feed the babies. And just yesterday, he went for his first post-operative jog. Now that doctors have cleared Chris for all physical activity, he has picked up long-distance road bicycling, and he plans to complete a race within the coming year.

‘As far as I know, no other heart transplant patient has done that,’ he says, standing over his twins on the couch. ‘I want to prove that it can be done and inspire other transplant patients to believe that anything is possible.’

This couple would know. Their life mantra is: Attitude makes the difference between adventure and ordeal. Theirs has been both, and they’ve come out smiling.

This article was originally titled "The courage of Chris and Tanya" in the December 2011 issue of Best Health. Subscribe today to get the full Best Health experience’and never miss an issue!