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Saving Grace

After five heart operations in the first 18 weeks of her life Grace Henderson is still giving ’em hell

For a split second she thought about just keeping Grace’s warm body next to hers.

She could feel her wriggle and push her foot persistently to escape her blanket like a newborn chick flailing to escape its shell.

But there was no escaping the gowned figure waiting for the baby.

Before she knew it Grace was enveloped in surgery greens and disappearing down the hall behind closed doors.

The date had been looming for weeks on the calendar: January 4, 2005. That was the day 18-week-old Grace’s bird-like chest was opened up so her heart could be operated on to repair a life-threatening hole between the two ventricles.

You would think giving up Grace would have been easier this time. After all the January surgery was the fifth major operation the infant has had on her heart since she was born.

"It wasn’t," said Kathy Henderson simply as she sat in the windowless Intensive Care Unit waiting room at B.C. Children’s Hospital earlier this month.

"It was harder to hand her to the nurses who were bringing her to the operating room and it is harder to see her hooked up to the machines now.

"This time we had a chance to bring her home and bond with her and get to know her personality. So this time to bring her down, and know it was a very complicated procedure she was coming for, it made it much harder."

Grace’s life and death battle began just two days after she was born by emergency cesarean at St. Paul’s Hospital in Vancouver on Aug. 21, 2004.

Both Stephen and Kathy began to notice she was having difficulty breathing and within hours she was whisked to B.C. Children’s as her heart began to fail.

Burly ambulance attendants and harried nurses rushed to ready the newborn for transport, her condition recognized as so serious that all stopped in their tracks as a pastoral minister offered a prayer at Grace’s bedside.

Within hours she was being operated on to repair a narrowing of the aorta, which was preventing blood from flowing through her body. Her body was dying organ by organ.

But Grace’s miniscule artery just didn’t hold up to the surgical repairs and the clammy, dying baby had to be prepped for a second similar surgery less than three hours after the first.

"The only thing to do was to go back into surgery and explore," said Dr. Jacques LeBlanc, head of cardiac surgery at Children’s.

Just before Grace went back into the operating room Kathy bent close to her ear and told the infant "to give ’em hell." It’s a mantra the mom has since adopted before every one of Grace’s surgical procedures.

But the August surgery was challenging and before it was over a doctor came to the anxiously waiting parents and explained that Grace had had two cardiac arrests, each lasting about 10 minutes. Each time the surgical team of six had worked to bring her back, but a third cardiac arrest would cause just too much damage. It was also likely the arrests had caused some minor brain damage.

"He asked us for permission to let her go if there was a third," recalled Stephen last week as he caressed Grace’s limp but restrained hand as she lay recovering from the January operation. A feisty baby, the nurses know Grace is an I/V-removing thrasher.

Grace made it through the August surgeries but doctors gave her less than a 10 per cent chance of survival.

"At that point I had already reconciled that we were going to lose her," said Stephen who remembers talking with one of the doctors about organ donation and the need for a post mortem.

"I stepped aside and talked to Dr. LeBlanc. I said, ‘So what do you think about a post-mortem?’ He looks at me a little surprised and says, ‘It is way too early for that. Just pray miracles happen.’

"I needed to hear that to give me that sense of faith and that there was an opportunity for hope even if it was a slim hope."

Kathy too had come to terms with losing Grace. While heartbroken she and Stephen tried to laugh when they could and stay positive around the baby.

"We still tried to smile and say how cute she was and how every extra hour we got from her was just a gift from God and if that was the time we were meant to have her for then we would accept it," she said.

It was in this darkest of moments, when all the science said Grace would not survive, that Stephen and Kathy developed a deeper sense of their faith.

"I watched a miracle," said Stephen. "What else can I say?"

Minute by minute the Hendersons got their baby back.

"There were two nurses and one doctor who were constantly hovering around her," he said.

"It was like watching a miracle at work. For the first few hours there was no sign of any response so it was bleak, but she was still alive. Then the colour started coming back into her legs and that was the biggest sign because it was like someone had magically painted her legs from the inside. There were bright patches of pink and purple and blue.

"Then the doctor let out a bit of a cheer when she responded to a touch by wiggling her toes."

Day by day Grace improved. In September she had to return to the operating theatre to surgically narrow one of the arteries going to her heart until her hole in the heart could be repaired.

As the Hendersons watched their baby grow stronger in the weeks they lived at church-quiet, beehive-busy ICU they also watched the medical teams devote their days and nights to saving the lives of other children.

"For those 12-hour shifts their only responsibility is the care of your child," said Kathy, in a voice touched with awe.

"Their only reason for being there is to make sure that every one of Grace’s needs are met, and they even made sure that our needs are taken care of. They don’t forget that we are going through this adventure as well and maybe not faring as well as the child, who is sedated and may not be aware of all the efforts being made.

"I felt safe when she was in ICU and had that kind of intense care."

Despite their faith and their belief in the Children’s medical team Stephen and Kathy knew that this latest hole-in-the-heart surgery was a complicated risky operation. But their experiences in the ICU in August and September gave them hope.

"I was surprised at the level of care and the level of empathy that existed in the hospital," said Stephen.

"Grace’s nurses were first class and the doctors were very professional and empathetic and I think that is a story most people don’t realize.

"We saw firsthand that our health-care system works. We are always hearing about what goes wrong but I think it is important to let people know what goes right."

Said Kathy: "It is so important to Steve and I to let people know that their dollars aren’t wasted. When I think of how little we pay into the health-care system and how much we have received so far I’m amazed.

"I can understand when people pay into the system and they are healthy and they don’t have children and they feel like their money is not benefiting them. So I want to say thank you for the dollars put in now. And hopefully down the road our contributions will do the same for some other two-day-old baby that needs heart surgery."

It’s a sentiment shared by Grace’s surgeon.

"I believe we have the best health care in the world," said LeBlanc, sporting a pair of bright red sneakers along with his surgery greens. "Everybody is treated. When you come to the emergency room or the ICU and you are sick then you get what you need to take care of you. Our teams are excellent."

Last year 250 infants and children were operated on by the cardiac department at Children’s, with a mortality rate of 1.4 per cent. While that is the lowest rate in Canada it’s not perfect.

"All you can do is make sure that you have done the best you could, that the quality of care and the standard of care were the best possible," said LeBlanc.

"You try to help the parents to go through this (losing a child) and try to make sure they understand what happened.

"For me, I have to go and help another child."

Grace was released from Children’s on Sept. 23. She did have to return to the hospital in December for angioplasty but it was this month’s open-heart-surgery which weighed on the minds of the Hendersons. They had to come to terms with the fact that their daughter, then a smiling, singing, 11-pound tot, might not make it.

"I took a lot of long walks and I told myself I had to be strong, I couldn’t show emotion," said Stephen.

"I had to be there for Grace. Obviously I hoped she would do well and survive, but I had to think about what would happen if she didn’t survive. Was I OK with that? Well, not really. But I was also glad that she was here.

"We have still had her for four months. And I wouldn’t want to give that up. If you could tell me that she would pass away in four months I would rather have that than nothing."

Those thoughts, their faith, and the support of family and friends, sustained Stephen and Kathy as they said goodbye to Grace on the day of the January surgery.

Kathy, who had been up all night with Grace, tried to rest as the five-hour heart surgery went ahead.

Stephen found solace with pen and paper and wrote his own prayer: "…Grace, the scars that you wear are badges of honour, and the marks of God.

"Grace wear your marks with dignity knowing you are a child of God…."

With an ear-splitting smile he recalled her tenacity when she refused to let go of the change table rails just hours after her birth. "She’s a fighter," said Stephen.

It’s a good thing to be a fighter when you face the battle of your life. For Grace victory was in sight. But not before she fought off a fever hours after surgery and gave everyone a good scare with an erratic heartbeat, now under control.

Finally, last week the Hendersons got the news they had been waiting for. The family could get ready to come home.

"It really seems to be that this chapter of her life is over," said Stephen.

And for the first time Stephen and Kathy are allowing themselves to dream about a future with their daughter, her first day of school, her first day on the ski hill, her first hike to the peak of Whistler.

"As much as I thought Grace was going to be fine I also prepared myself for the chance we might lose her and it is only (now) that I realized that I no longer have that worry from this condition," he said.

"I see us hiking, kicking a soccer ball with the dog and picking blueberries together. Yes, especially picking the berries. It’s a good feeling to be able to feel the future."



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