Living with Adult Congenital Heart Disease: A Patient’s Story

June 2014

Adult congenital heart disease patient Lana Gillard and her family
Adult congenital heart disease patient Lana Gillard and her family enjoy the outdoors following her second cardiac surgery.

Lana Gillard was used to going to the University of Ottawa Heart Institute. Her mother was a long-time patient there, suffering from chronic heart failure after many years of treatment and several open-heart surgeries. Gillard accompanied her to appointments and knew her mother was in excellent hands.

What Gillard didn’t know was that a defect, present inside her own heart since before she was born, would turn her into a patient herself while she was pregnant with her second child. She had no idea there was such a thing as adult congenital heart disease (ACHD)—congenital heart defects in people who have survived them since birth and grown to adulthood. And she certainly didn’t know that the Heart Institute was home to the Adult Congenital Heart Clinic that would save her and her baby, and then save her once again 10 years later.

All Gillard knew in 2003 was that she had been feeling faint, swollen and short of breath for a while. Then one day she walked up the stairs and almost passed out. After a checkup with her family doctor and some tests and referrals to other specialists, Gillard found herself meeting the team at the Adult Congenital Heart Clinic and learning a whole lot about her heart in a very short time. A growth in her heart—known as sub-aortic stenosis—had become so large it was blocking  normal blood flow, forcing her heart to work overtime. She was at high risk of heart failure as the pregnancy continued.

“I was very scared,” said Gillard, who was 27 at the time. “I had no clue up until then.”

The team, including clinic director Luc Beauchesne, MD, and advanced practice nurse Joanne Morin, laid out Gillard’s options: have surgery within a few weeks to remove the growth, a rare undertaking that posed some risk to the pregnancy; terminate the pregnancy; or delay surgery until after delivering the baby. The last option was the riskiest. There was a very real possibility that Gillard would not survive delivery if the blockage wasn’t removed. Terminating wasn’t an option Gillard could accept, as tests showed that the baby—then 22 weeks in gestation—was perfectly healthy.

Gillard’s husband Norm rushed home from Bosnia, where he was serving with the Canadian military. They named their unborn baby boy Brody and made plans for surgery. The six-hour operation was performed by Gyaandeo Maharajh, MD, from the Children’s Hospital of Eastern Ontario, a pediatric cardiac surgeon and key partner of the Adult Congenital Heart Clinic team.

“I remember waking up, breathing tubes still in, and right away putting my hand on my belly,” said Gillard. “I remember feeling the baby was still there. That was a huge relief.” She went on to deliver Brody safely at 38 weeks.

Gillard’s heart defect had come as a shock to her, but most ACHD patients know they have a heart defect and receive treatment for it as children. What they may not realize is that many congenital heart conditions can lead to complications as adults. According to Morin, in the last decade, those treating ACHD patients have put a lot more emphasis on the importance of continued monitoring of these conditions as patients age.

“It’s impressed upon the parents and translated to the kids that even though you’re well now, whether you’ve had an operation or not, you can deteriorate unexpectedly and require intervention down the road,” said Morin.

“Kids think they’re invincible,” she added. “A lot of patients in need of surgery feel just fine, so it can be a hard sell. I have to let them know they should visit us every now and then, even if they’re grown-ups busy with their lives.”

“I remember feeling the baby was still there. That was a huge relief.” – Lana Gillard, Adult Congenital Heart Disease Patient

Morin urges congenital heart patients planning a pregnancy to visit the clinic for some tests first, to ensure their heart is up to the job of working 30 to 50% harder to pump blood for both mother and baby. The team also recommends testing to determine if the babies of congenital heart patients also have a heart malformation.

“The risk of a congenital heart abnormality in the general population is close to 1%, for everything from benign to life threatening conditions,” said Morin. “But if a parent has one, the odds for their children change to about 3 to 6%,” making it something important to look for early in life.

Gillard’s two sons have been tested, as has her sister, and over the decade since her first surgery Gillard has made sure to attend regular follow-up appointments at the clinic. Late last year, she began to slow down again and feel the familiar symptoms of fatigue and shortness of breath.

“My body was talking to me but there was a little bit of denial going on,” said Gillard, now 37.

Tests confirmed what the doctors suspected: the sub-aortic stenosis had grown back. Gillard underwent surgery in April with the same surgeon—almost exactly 10 years after her first operation. She is recovering well and looking forward to a summer of fishing and swimming with her boys  and reading on the beach.

“They are just great, so amazing,” said Gillard, of the Heart Institute team. “I don’t know what I would have done if we didn’t have them here. Their fast action led to a good outcome, twice. If we had kept waiting and waiting, it wouldn’t have been the same.”


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