Matters of the Heart

For Redwood City parents coping with 5-year-old’s chronic disease, normal life is the greatest gift

Article appeared on Dec. 3, 2009 in the Silicon Valley Pulse
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Five-year-old Chase Coughlin is hanging upside down giggling uncontrollably as his papa, John, carries him down the hall by his ankles. Chase begged his dad to carry him this way.

But, as John approaches the dark steps down to his bedroom, Chase stops laughing and begins to whimper, “No… No… NO… NO!”
Chase is afraid of the dark.

John, a six-foot-plus, broad-shouldered ice hockey goalie, brings his blue-eyed son’s face close to his own. Chase’s shirt falls back into place, covering the 10-inch scar running down the center of his chest. His “zipper.” It’s where the doctors went inside him to fix his heart, he says. They went inside him to fix his heart five times.

Chase has other zippers too. One on each hand where the doctors fixed his thumbs, which were locked into bent positions. And a few smaller ones on the sides of his chest and stomach where medicine ports used to be.

So far, he’s avoided getting a zipper on his lower back to address the fact that he only has one kidney. Or one on his head to treat his occasional seizures. Or one to confront his Klinefelter syndrome, the extra x-chromosome present in each of his cells that causes low levels of testosterone.

Chase’s many medical conditions have made him eligible for a wish – a trip to Disneyland – from the Make-A-Wish Foundation. But, this joyful trip is not the only event on his horizon.

It’s likely that Chase will have to have the zipper on his chest opened for a sixth time. If a last-ditch medication doesn’t slow the increasing damage to his heart, his doctor will recommend putting him on the transplant list.

John pulls his little boy in close. “Chase, [the dark] isn’t scary,” he says. “All we have to do is turn on these lights.”

Hearts in crisis

John Coughlin and his wife Tara have spent most of the last five years trying to turn on lights. Chase was born with hypoplastic left heart syndrome. According to the Mayo Clinic, the left side of his heart is “critically underdeveloped.” Oxygen doesn’t travel through his body like it should, causing him to be constantly out of breath and tinting his skin and tiny lips blue.

Hypoplastic left heart syndrome affects roughly 1,000 infants per year and, if untreated, is fatal within days of birth. This is, of course, assuming the parents decide they want to give birth at all.

John and Tara learned of the problem 16 weeks into pregnancy.

“We were so excited at the first ultrasound,” said Tara, who was 35 at the time and had never used birth control in her 12-year relationship with John.

“Suddenly I was pregnant, and we felt so blessed,” she said. “We were goofy and laughing and asking the ultrasound tech questions like whether it was a boy or a girl. But the tech just stood there, so serious, staring at the ultrasound machine. She told us to hang on. Then she just left the room.”

The nurse returned with the doctor, and soon Tara and John weren’t laughing anymore. It was Down’s syndrome, the doctor thought. But they’d run some tests just to be sure. They started with an amniocentesis that day.

“The needle was like a knife.” Tara said.

So were the results. It wasn’t Down’s syndrome.

Over the next three days, Tara and John faced a whirlwind of waiting rooms, exam tables and charts and images they couldn’t read but that inevitably made doctors frown.

It was a far cry from the early days of their relationship. He was the square-jawed, dark-haired entrepreneur who co-founded Premiere Tickets, a ticket-brokering company. After work, he strapped on heavy pads and a goalie mask and thrived on the adrenaline of pucks flying at him 80 miles-per-hour.

She was a tall, slender waitress working toward a psychology degree at San Francisco State University. She had long brown hair she pulled into a ponytail on the weekends while she trained for half marathons.

Mutual friends introduced them at a dinner party in 1991. They went to shows and concerts together. Cirque du Soleil. Sting. The Gypsy Kings. John got great seats through work. He asked Tara to go with him, and she said yes.

In 1996, he asked her if she would marry him, and she said yes.

Two years later, when industry-giant Razor Gator bought Premiere Tickets, John left and started his own retirement fund company. Tara joined him in 2000. They worked as a team; she made sales, and he handled the business administration.

They lived in a trendy loft in San Francisco. They bought multigrain crackers and camembert cheese at Whole Foods Market and went out for sushi on Fridays. They got matching angel tattoos on their left biceps. Once, Tara traveled with a girlfriend to Bali, and John flew out to join her on a whim. From there, they jetted off to Thailand.

Another time, they strolled by a pet store that happened to have a litter of chihuahua puppies. When they left, John’s wallet was $4,000 lighter, and two pups – Beverly and Wilshire – wriggled in Tara’s arms. John and Tara played with their dogs after work and figured that someday they’d be playing with their child.

Friends and family had all been so quick to offer congratulations when the Coughlins announced they were finally going to have a baby. Now that the parents-to-be had much graver news to deliver, everyone listened in shock and sympathy. None of them even tried to offer advice.

John and Tara met with a geneticist… a pediatric cardiologist… a grief counselor. All the professionals came to the same conclusion.

“The grief counselor gave me a packet of information about abortion and offered to schedule the procedure,” Tara said.

“I asked the pediatric cardiologist whether she would go through with the pregnancy if it was her own baby,” John said. “She said no.”

Tara specifically recalls leaving that appointment. “It was this brilliantly bright moment on a foggy day in San Francisco,” she said. “John and I held hands and talked. We had our spiritual moment as a couple, and we made our decision that day. In my heart, I always knew it was yes.”

“It didn’t seem like a difficult decision for us,” John said. “The abortion suggestion was just strange. It took us a long time to get pregnant. People are used to seeing people who can get pregnant repeatedly. Not us. It was painful and scary, but we never questioned what we wanted to do.”

Tara said she was never fundamentally against the idea of abortion. She just never really believed it was an option for this baby. Her baby.

The couple calls themselves “spiritual” rather than “religious,” but Tara said she felt like they were chosen to care for this “angel.”

“There’s so much more the universe has to teach us,” she said. “It’s really out of our hands. But it’s also in our hands.”

Glimmers of hope in a dark world

Knowing they were committed to bring this fragile baby into the world, the next question John and Tara faced was how. That answer came through a computer screen.

“I went online to find glimmers of hope in a dark world,” Tara said. “And most of the web sites I found [created by families facing the same disease] were web sites of joy. I felt like there really was hope.”

Internet research also led them to another source of hope: Dr. Frank Hanley, chief of pediatric cardiothoracic surgery at Stanford University’s Lucile Packard Children’s Hospital.

“Everyone [with hypoplastic left heart syndrome] wants to get into Stanford all the time,” John said. “I went into super power mode to get us into this hospital because I didn’t want [my son] to feel any stress. I wanted to know we’re working with the best. The doctor is a freaking genius.”

Tara and John met with Hanley that week, and he ordered a new battery of tests. Because Stanford is a teaching hospital, Tara said, she was bombarded by residents, all wanting to learn from her risky pregnancy.

“I knew I was in the right place when everyone wanted to see me,” she said.

Of 500 pediatric heart patients Lucile Packard Children’s Hospital treats each year, roughly 25 are children with hypoplastic left heart syndrome.

John recalls the reaction of one of the first ultrasound technicians they visited at Stanford.

“You guys must be Catholic,” he said, looking at the imaging. When they said they were not, he responded, “Well, then you must like to play the stock market.”

“It was refreshingly direct,” John said.

Hanley agreed to take the Coughlins’ case. He gave them the option of putting their unborn son on the heart transplant list right away, or trying to treat him first with a series of surgeries that were invented less than 20 years ago and are still considered unconventional.

Once again, John and Tara proved to be mavericks and began gearing up for the journey ahead. They moved from San Francisco to a house in Redwood City – 15 minutes away from Lucile Packard Children’s Hospital.

Doctors closely monitored Tara throughout the pregnancy, which in her recollection “sucked.”

She tried reading the baby books her friends recommended, but she quickly realized those books didn’t begin to cover what she should expect.

“There was so much fear,” she said. “There was fear of my son dying as soon as he came out. [The wait] just seemed so long.”

John and Tara each deal with anxiety and grief differently. This sometimes added stress to the already tenuous situation.

“John doesn’t like to talk about this stuff, and he doesn’t want all the information like I do,” Tara said. “For me, knowledge is power, but for him, he just wants to know we’re in good hands and let the doctors handle the details. He shut down [during the pregnancy].”

“I may not interview doctors like she does,” John said. “But I know the details. I know the details enough to make a decision. Trust me, I know the details.”

He didn’t look like a little baby

A month before Chase was born, Tara’s friends and family threw her a baby shower – or as she puts it, a ceremony.

At the urging of Tara’s best friend, each person at the shower strung a bead on a piece of periwinkle embroidery thread. Some people chose colored glass beads. Others selected polished stones or wooden baubles. One even added a plastic dog charm.

“As each person put a bead on, they said something about me and John or something about Chase. We all cried. It was really emotional. There was so much love put into that necklace.”

On Feb. 29, 2004 – 39 weeks into her pregnancy – Tara put her necklace on. Doctors induced labor, and she lay in a hospital bed watching the Academy Awards and waiting for results. Nothing happened.

By midnight, doctors were discussing sending her home. So she started to pray. “I was not going home,” she said.

By morning, she was dilated five centimeters. By 7 p.m. she began to push, and her 6-pound, 11-ounce baby boy entered the world.

Joseph Chase Coughlin. Named for John’s father, who died before his namesake was born.

Doctors placed a fragile bundle in Tara’s arms for an instant. She had a few seconds to make eye contact with her son. Then he was gone, and John with him, rushed to the neonatal intensive care unit.
Three hours later, Tara saw her baby again. It was time to feed him.

“He didn’t look like a little baby,” she said. “There were so many wires and tubes. He had to go right on medication to keep his airways from shutting down.”

Feeding baby Chase is a term Tara uses loosely. She did not nurse him. She pumped breast milk for him every three hours, which nurses fed him through a feeding tube. A tube he would require for nearly six months.

“It was not a good bonding experience for mother and child,” Tara said. “But I pumped every three hours, because it was the one thing I could do for Chase. The nurses kept stressing that to me.”

After two days in the hospital, doctors discharged Tara and sent her home. She would soon be back, though. The first of Chase’s open-heart surgeries was scheduled for the next morning.

We couldn’t hear him cry

The hospital waiting room was never empty during the six hours Frank Hanley took apart and reassembled three-day-old Chase’s heart. Tara, John, John’s mom, Tara’s parents, and numerous other friends and family stood guard. When one left, others would stay and keep watch.

The vigil that took place March 4, 2004 would be repeated. March 20, 2004. July 28, 2005. May 11, 2007. October 15, 2008.

“I did a lot of sitting through the night,” John’s mother, Carolyn Coughlin, recalled. “I stayed when I knew Tara needed rest. Sometimes John would come relieve me at the hospital after hockey games. One or the other of us was with Chase 24 hours a day.”

With each surgery, Tara put her necklace on. It was her talisman, and it always seemed to work. Each time, Hanley eventually appeared at the waiting room door with a smile and a hug, and John and Tara rejoiced over this cardiothoracic surgery god. Hanley could do anything, it seemed. Anything, except heart transplants. If the time ever came for that operation, John said, “We’d reach the end of the road for what Dr. Hanley could do for us.”

Chase’s lovingly prepared nursery sat empty for six weeks after he was born. When John and Tara finally did carry him through their front door for the first time, anxiety eclipsed the joy of the homecoming.

“Everyone wanted to come over and meet Chase,” Tara said. “But we were terrified of exposing him to things. A cold could have killed him. When friends asked if they could visit, we said, ‘Uhhh…can we just send a picture?’”

But the house wasn’t completely empty when Chase arrived. When John pulled the family car into the driveway, a home nurse was waiting at the door to give them a crash course in caring for their fragile little boy. It was the beginning of the Coughlins’ new normal.

John and Tara took turns feeding Chase breast milk through his feeding tube every three hours around the clock. He had to sit on an incline when he ate or he would throw up the meticulously administered food. It happened after almost every meal.

Unlike the precious pink lips of all Tara’s friends’ babies, Chase’s lips were blue – a product of the fact that his bloodstream only had 80 percent of the oxygen that healthy babies have. And no cries ever escaped Chase’s beryl lips because he didn’t have a voice. An ear, nose and throat specialist speculated that surgeons might have damaged his vocal cords during one of his first surgeries.

“We couldn’t hear him cry,” Tara recalled. “It was just silence with a sad face.”

The silent, sad face was constantly out of breath, causing people to approach Tara in public places and ask if Chase was okay. When she told them he was, they would often gaze at him skeptically and then insist, “No, look at him. Are you sure he’s really okay?”

In retrospect, Tara admits she was not prepared for the realities of life with her newborn baby. “Someone should have told me,” she said. “I guess they didn’t because they didn’t want me to lose my mind.”

As Chase got older, new challenges emerged. He began to understand that he wasn’t like other kids. When his preschool class had cookies for a snack, he was the only child who couldn’t have one. Low-sodium diet. When his classmates zoomed down the slide at recess, he had to stand clear. High risk of injury. When it was time for art, Chase’s paintings didn’t look like the other kids’. Underdeveloped motor skills. By age 3, in a stroke of medical good fortune, Chase developed a raspy voice. His classmates thought it sounded funny.

Tara went to preschool to educate the teachers and students about why Chase was “special.” She asked the kids if they’d ever had cuts on their knees or fingers – if they’d ever gotten scars. Then she had Chase lift up his shirt to show off his scar.

When Chase had to miss school for doctors appointments or surgeries, Tara told him that he needed to “go in for a tune up.” After all, he has a special heart, and it “just needed a little work.”

“No one ever told me how to me how to explain this all to a child, never mind accept the reality of losing Chase,” Tara wrote in an e-mail updating friends and family on Chase’s health. “I do know that I chose him with knowledge and complete love while pregnant, and the rewards have been astounding. I am not ready to consider a life without his beautiful presence.”

When Chase was 3, he had a 17-minute seizure, requiring paramedics and an overnight hospital stay. Doctors couldn’t precisely identify the cause but prescribed daily medication to prevent future episodes. Since then, he’s had three more seizures. For now, they remain one of the medical mysteries that lie within Chase.

Beyond medical and emotional challenges, the Coughlins faced financial ones. Both John and Tara sing the praises of their health insurance policy, which has a $6-million-per-person lifetime cap. But their out-of-pocket medical bills have been as high as $60,000 in one year.

“Our medical bills are enough to choke a horse,” John said.
By the time Chase was 5, insurance had paid $3 million toward his medical expenses. Tara worries that if he needs a heart transplant, the operation and anti-rejection medication could catapult them to the cap.

“I don’t know what we’d do then,” she said. “Go out and get other jobs, I guess. Insurance was a factor when we were deciding [whether to have Chase], but it wasn’t the deciding factor. It was just another hurdle.”

A routine cardio appointment

On Nov. 12, 2009, Lucile Packard’s automatic hospital doors open for Tara and Chase. Tara is thinner than she looks in the photos taken when Chase was a baby. Her facial features are sharp and alert, not as soft as they used to appear.

Columns of pastel ceramic tiles flank the hospital doors – tiles painted by childish brushstrokes. There are rainbows and crosses, hearts, flowers and names. There are sunbursts and cartoon characters – Mickey Mouse and Bart Simpson. And there is one light blue tile with scrawling purple letters that reads, “Live for today.”

Chase is on his way to a routine cardio check up – if there is such a thing in his world.

After his October 2008 surgery, John and Tara had seen positive change in their son. He had more energy and took more initiative. He was talking, laughing and learning. He constantly wanted to sing songs like “Twinkle, Twinkle, Little Star” and “Row, Row, Row Your Boat,” which he’d learned in a private music class. He liked to lay in bed with Tara and look through magazines, identifying pictures that started with his preschool’s letter of the week.

“He got really independent,” Tara said. “He had been on five or six medications, and by last April, he was off all of them.”

Recently, though, Chase had complained of being tired. He hated going up and down steps and didn’t want to skip or run when his music class sang “Skip to my Lou” and “Ride the Steam Train.” The director of Lucile Packard’s pediatric heart failure program, Dr. David Rosenthal, expressed concern over Chase’s September echocardiogram results. He re-prescribed three medications that Tara and John thought they were done with. “We’ll keep a close eye on him,” Rosenthal said and recommended increasing the frequency of Chase’s blood tests to every two weeks.

Now, six weeks later, Chase is lying on his back with his zipper exposed as the echocardiogram technician rolls the imaging device through the puddle of blue gel she’s just applied to his chest. He is eating a quartered ham and cheese sandwich, and his eyes are fixed on the red, blue and yellow-suited characters scampering through one of the Disney Channel’s weekday morning shows.

John and Tara worked hard to create this placid state of mind for their little boy, who had grown up being pricked and scanned and prodded and bandaged inside these hospital walls.

“The hospital’s not a scary place,” Tara says. “It has a gift shop and a train. Sometimes we stop by to say hi to the doctors and nurses even when we don’t have appointments.”

Chase pries his eyes away from the Disney Channel on a commercial and offers his sandwich crusts to his mom.

“I’m going to see Mickey Mouse next week,” he says, referring to his upcoming wish.

Tara had contacted the Make-A-Wish Foundation in August. The organization grants once-in-a-lifetime wishes to children with life-threatening medical conditions. John was familiar with the foundation because he used to donate event tickets to it in his ticket brokering days. The Coughlins also knew other children with hypoplastic left heart syndrome who had received wishes.

“I didn’t know how long it would take to get a wish,” she said, “But by the grace of God, he’s still with us. I thought it’d be great if we could do the wish in the next few years.”

As it turned out, the foundation moved much more quickly than she expected. Within weeks, Make-A-Wish volunteers were sitting in the Coughlin living room, helping Chase unwrap gifts and asking what he would wish for if he could have anything in the world.

For Chase, that wish was a trip to Disneyland. The Coughlins had been there the year before with another hypoplastic left heart syndrome family, but it rained two out of their three days in the park. Chase wanted another chance.

As the Make-A-Wish Foundation booked Chase’s plane tickets and planned his sendoff party, Rosenthal’s team drew Chase’s blood and examined his scans. The cardio appointment spanned three hours and involved a nurse, an echocardiogram technician, a phlebotomist, a physician’s assistant, a medical resident and – finally – Rosenthal himself.

When the doctor entered, Chase was laughing at the resident’s black nail polish.

“I need to listen to you for a minute, my friend,” Rosenthal said as he placed his stethoscope against Chase’s back.

When Rosenthal finished, Chase jumped off the exam table, grabbed a brown erasable marker and started drawing Thanksgiving hand turkeys on a white board on the wall.

“I am, in fact, pretty concerned about transplantation in the near future,” Rosenthal told Tara. “It’s nearer than we thought.”

Chase abandoned the white board and began scribbling on the wall.

“I had that in my mind,” Tara said, her eyes flickering down then quickly rising to meet Rosenthal’s. “It’s okay. I would rather be prepared.”

Chase moved his marker from the wall to the tile floor.

“That doesn’t mean there aren’t other things we can try,” Rosenthal said. “I’m going to start him on a low dose of carvedilol to prevent adrenaline in his blood stream from getting to his heart and making it beat faster. Look out for dizziness and watch his concentration. And I want to see you frequently.”

Chase announced he wanted to go to the gift shop.

“Is carvedilol the first thing to try before we look at a transplant?” Tara asked.

Chase jammed his feet back into his socks.

“Carvedilol is the last thing we try,” Rosenthal said. “His heart is notably worse than it was in April.”

Rosenthal explained that while carvedilol has shown promise in adults, it hasn’t been especially successful in kids. He suggested they try it for six months. There were three possible outcomes, he said. One: The drug would make no difference. Two: It might sustain Chase’s sick heart a little longer. Three: In about 10 percent of cases, the drug turns things around.

“I’ll just pray we’re in the 10 percent,” Tara said.

Discussion turned to the transplant option. Tara wanted to put Chase on the list immediately, thinking it would increase his chances of getting a heart. Rosenthal cautioned against that, saying that because hearts become available on a moment’s notice, patients shouldn’t go on the list until the doctors and family members all agree that it’s definitely something they want.

“It’s an agonizing decision,” he said. “You want to decide in your leisure, in the light of day, whether this is the right decision for you.”
But if Chase’s heart is so weak, why would Tara and John even question putting him on the transplant list?

“It’s a major operation,” Rosenthal said after Tara went to fill the carvedilol prescription. “Transplant patients have to commit to a high burden of treatment the rest of their lives. There will be frequent visits and echoes… catheterizations… invasive procedures…”

And the real catch: “The average survival rate for someone Chase’s age is 14 years after transplant.”

Without a new heart, Rosenthal doesn’t think Chase has that long.

While waiting for the hospital to validate a parking pass, Tara pointed out a newspaper clipping she carries in her wallet. It’s about a girl who had a heart transplant at Stanford University Medical Center as a child and is now a thriving 20-year-old.

“Of course we’d go on the list,” Tara said. “What’s the alternative? Let your child die? They offered us [that option] when he was born, too, and I was like ‘Are you kidding me?’

It’s even harder now… now that I have a relationship with him. It’s harder to think about losing him than it was when he was a baby.”

Before leaving the hospital, Chase finally got his trip to the gift shop. He made a beeline to the candy corner.

“No candy, Chase,” Tara said. “Dr. Rosenthal said you can’t have it. What about a dinosaur, or this tic-tac-toe game or a new stuffed animal?”

Chase paid no attention to his mom and grabbed two packs of Juicy Fruit gum, which the cashier was soon ringing up.

“He won,” Tara said. “I’m such a pushover.”

The happiest place on earth

Five days after receiving Rosenthal’s disheartening news, the Coughlins stood in the Happiest Place on Earth. Today, the sparkle in Chase’s blue eyes surpassed any tinge of blue around his lips. Today, there was no sign of rain.

Chase gazed up in wonder at the 60-foot Christmas tree Walt Disney’s elves had erected next to the Emporium souvenir shop. The Emporium overflowed with gleaming red and green lollipops, Santa-capped mouse ears and glittering snow globes. A barbershop quartet clad in yellow bowties and green bowler hats pedaled past on a four-man bicycle. “It’s Beginning to Look a lot Like Christmas” they sang. Caramel corn’s syrupy aroma coated the air and whiffs of pink cotton candy sugar wafted by.

The hours leading up to this moment had been restless and eventful for the Coughlins. The night before, the Make-A-Wish Foundation treated Chase to a V.I.P. night at Medieval Times, a dinner theater where diners eat chicken legs with their hands and sip from silver chalices while watching knights on horseback joust for the hand of the beautiful princess.

John, Tara and Chase hardly made it past the castle door. As soon as the trumpets began to blare, Chase jammed his hands against his ears. A regal voice came over the speakers and announced that, tonight, the diners might witness a fight to the death.

Chase’s eyes widened. “I don’t want anyone to die,” he said with trembling lips.

John and Tara scooped up their son and headed back over the drawbridge into the parking lot. It would be pajamas and room service for dinner.

Later, Chase was so excited that he could hardly sleep.

“He kept playing musical beds with John and me,” Tara said. “He went to bed next to John, but soon I woke up with him next to me.”

Finally, at 4:30 a.m., John and Tara gave up the battle for sleep and had room service deliver a Mickey-Mouse-shaped waffle to their room. Chase had a bedside breakfast picnic as the first rays of dawn streamed through the hotel curtains.

Six hours later, Chase’s red tennis shoes finally stepped through the Disneyland turnstile. His Make-A-Wish sticker and a special guest assistance card opened more doors than magic words. Park employees cheerily ushered Chase to the front of every line.

In three hours’ time, Chase soared above Tomorrowland in a rocket, piloted a yellow-and-white teacup into dizzy oblivion and found Nemo, who was waving to him through a submarine window. He asked for – and was denied – cotton candy. He paused for medicine and for bathroom breaks, which were more frequent as a result of the medicine. The short waits in between rides gave Tara just enough time to pepper Chase’s hands with antibacterial spray.

Chase giggled and steered Winnie the Pooh back to his missing honey pots in Critter Country. He donned small red sunglasses to match John’s large black ones and took to the skies with Dumbo. He took the glasses off on the It’s a Small World boat and gasped with delight when the ride’s dancing boys and girls began to sing “Jingle Bells” instead of the expected title song.

With a jazz trio serenading them, the Coughlins enjoyed a late lunch at a patio table in New Orleans Square. John and Tara spent 15 minutes combing the buffet in Disneyland’s faux French quarter, looking for the right mix of food their son would – and could – eat. They settled on macaroni and cheese, grapes and a box of apple juice. Tara convinced Chase to take a few begrudging bites of sautéed vegetables off her own plate for good measure.

John then pulled Chase onto his lap and wrapped his tired son in his own faded blue hooded-sweatshirt. Chase’s blue eyes peeped out from the enormous hood as he nestled into his dad’s chest. After a few serene moments, Chase repeated the question he’d been asking all day.

“Can we get cotton candy?”

“Yes,” John replied.

“Yes?” Tara repeated, raising her eyebrows to question her husband.

“We promised him,” John said.

Soon Chase’s sticky fingers were plucking apart a sugary pink cloud.

There were only a few moments that challenged the perfect sweetness of this day. Having seen the movie Toy Story, Chase led the way aboard Buzz Lightyear’s Astro Blasters ride. He picked up his laser gun, ready to help Buzz fight off the Evil Zurg. But darkness quickly swallowed Chase and his laser beam, leaving him lost in a maze of neon robots, strobe lights and thundering animatronic laughter.

“It’s scary in here!” Chase said. The red laser cast an eerie glow on his face – enough to illuminate the tears brimming over his eyelashes. “We have to get off. Now! NOW!”

There was no way off.

Tara had once said that when other “heart moms” sought her advice about whether to have a child diagnosed with hypoplastic left heart syndrome, she always told them to “do it.”

“I don’t tell them how grueling it is,” she said. “I don’t want them to be scared.” Her eyes grew shiny as she pressed Chase’s small hand between both her own. “I just can’t think about not doing it. But, I know not every family is like our family.”

At the end of the nightmarish ride, Chase’s car emerged from a tunnel and light prevailed once again. When he stepped out of his car, John lifted him into a bear-hug embrace, and Tara wiped a few remaining tears from his cheeks.

“It was only dark for a minute, and Mama and Papa were right there,” Tara told him. “We’re all here together. You don’t need to be scared.”