Manassas Journal Messenger | HOOPS FEST 12 | A life renewed

• SLIDESHOW A life renewed

An orange glow rises out of the fireplace as an early March afternoon turns to dusk and Jennifer Hedrick is curled up on a couch in the den of her family’s Manassas area split-level home.

Rain drops splash against the windows. There is a hint of spring in the air but Hedrick chills easily and she shivers.

The soft cushions are comfortable, if only they provided more warmth.

“It’s always cold down here,” she explains.

Jennifer is already bundled up in a sweater, but eventually decides that her Siberian husky, Coty, has a better idea. She’s found a cozy spot on the floor just in front of the hearth.

The flames seem far more inviting. So Jennifer slides off the sofa and walks across the room.

She travels maybe a dozen steps, but the journey – and the independence that accompanies it – is liberating.

A few of months ago, before a heart transplant saved her life, Jennifer couldn’t lift herself off the couch, much less walk on her own. At 17, she was unable to do many of the things that her friends and classmates at Osbourn Park High School accomplish without the least bit of effort, like climbing stairs, riding roller coasters, watching scary movies or even driving a car.

“She’s not your typical teenager who stays out late and misses curfew,” her mother, Deborah, said.

In many ways, Jennifer is an ordinary girl, fond of animals, candles, Justin Timberlake, handmade jewelry and movies starring John Travolta. She has a boyfriend and is making plans for the senior prom.

But the 7 1/2-inch scar in the middle of her chest is a constant reminder that Jennifer Brooke Hedrick will always be different.

“She’s better, but I haven’t given her a completely normal life,” said Dr. John Berger, medical director of the cardiac transplant program at Children’s Hospital where Jennifer had her surgery. “She wasn’t able to do certain things that she should be able to do. The goal is to restore her to as normal a life as possible.

“The transplant is just the first step.”

On Thanksgiving Day, after nearly a decade of illness caused by hypertrophic cardiomyopathy, Jennifer received a donor heart that will enable her to experience things she once only dreamed about.

College is a possibility. Maybe one day, she will get married. But for now, Jennifer can think about graduating from high school in June and really put some effort into her passion for sketching and charcoal drawing.

“This is a whole new start,” she said. “A whole new life.”

WHAT IS NORMAL?

When she woke up following surgery, her mouth dry from anesthesia and arms in restraints to prevent her from pulling out the IV lines carrying medicine to her healing body, Jennifer had two requests for the nurses: She needed a bed pan and wanted to feel her heartbeat.

“When my heart races now it’s so different compared to the way it was before,” she said. “It doesn’t feel like it’s working so hard. It’s very relaxed. Normal.

“I’ve always said to myself, ‘What is normal?’ I guess this is normal and it feels pretty darn good.”

She has known nothing but fear and illness for so long that Jennifer delights in the most basic pleasures these days. There is a candy dish filled with chocolate on her dresser and two boxes of colored string waiting to be turned into bracelets. Just being in her basement bedroom again is comforting. It is lovingly referred to as “the cave” but it is filled with everything that Jennifer loves.

There are so many stickers on her mirror she can barely see to brush her hair. Taped on the wall beside her bed are posters of Orlando Bloom and Richie Sambora – but, shockingly, there’s no Travolta in sight. Handmade dream catchers, a Native American custom, hang over her nightstand and a framed certificate from the International Star Registry reveals the exact location of the star that has been named in her honor.

Because she is still susceptible to germs, a screen door guards the entrance. It is meant to keep her cat, Precious, and dogs, Coty and Shadow, out but Jennifer sometimes sneaks Coty in at night.

She can’t help it. Animals are a weakness.

Even stuffed ones. Which is why sleeping in her own bed again is a huge deal, partly because it comes with a remote control but mostly because her favorite stuffed animal, Sheepy, resides there.

“I’m seventeen but I sleep with all my stuffed animals on my bed,” she admits without a hint of embarrassment. “Sheepy has always been with me. I’ve had that one since I was six.”

When her room was sterilized following surgery, a lot of Jennifer’s belongings were thrown away. Sheepy stayed. And during her recovery at the hospital, Jennifer had Sheepy tucked in her arms.

Of course, Deborah’s fiancé, Danny, had to wash it first.

“I was a little upset about that because I was afraid it would get ruined,” Jennifer said. “But it puffed back out again and was fine.”

Sheepy has been around for every memorable tradition in Jennifer’s life – baking Christmas cookies with her father, Steve; visiting the Wild Bird Center in Lake Ridge; touring antique shops and crying during viewings of The Lion King – so she can’t possibly part with him now.

Four months following surgery, there are still occasions when Jennifer needs comforting.

“I was very scared walking for the first time. My legs were so weak,” she said. “Going up the stairs I still wonder if I’ll be out of breath when I get to the top. But I’m not.”

The scariest episodes are behind her. She’s survived four strokes, multiple episodes of congestive heart failure and a seizure. Jennifer is healthier than she’s ever really been.

But receiving a heart did not cure her illness. There is a risk of rejection that never goes away. Her mother had to learn how to give insulin shots and the medications that help prevent infections and coronary artery disease require a pillbox with three dozen lids.

“There are side effects,” Jennifer said. “I get trimmers and there’s drowsiness. I woke up one time to go to the bathroom and I thought I was in France. I was so out of it.”

She’ll take medicine the rest of her life. And, in 10 to 15 years, she will likely need another transplant.

Jennifer doesn’t dwell on that. There is too much to look forward to.

“She’s become functionally independent again,” Deborah said. “We’re trying to make the heart last as long as it can.”

POSTER CHILD FOR DETERMINATION

When she was diagnosed with what is essentially an abnormal thickening of the heart muscles, Jennifer had just entered third grade at Pattie Elementary School.

She was about to celebrate her 8th birthday. A surprise party had been planned.

It was cancelled and her life completely changed.

“We were never allowed to let her heart beat above a normal level,” Deborah said. “She was restricted from any physical activities.”

Because the most prominent side effects of her ailment are blacking out and sudden death, Jennifer couldn’t do anything that might cause her heart beat to accelerate.

That meant she had to give up rollerblading and a fledgling gymnastics career.

Horror movies were out, roller coasters, too. She couldn’t ride a bike up hill or swim without supervision. She hasn’t participated in recess or physical education of any kind since 1997.

“The reality is she’s had to do everything in moderation,” Deborah said.

Doctors used medication and, eventually, a pacemaker to control her heart rate but her condition gradually worsened. Jennifer suffered her first stroke when she was a freshman. One caused temporary blindness and another resulted in episodes of short-term memory loss. She still struggles with numbers and any kind of math.

Shortly after her 16th birthday, Jennifer’s heart muscles were simply too thick to pump blood properly. Dr. Berger estimated that her heart was functioning at 30 percent efficiency.

“We were worried about her,” he said.

By July 24, Jennifer’s condition was so severe that she went on a waiting list for a transplant. Nine weeks later, a pacemaker was inserted in her heart to prevent abnormal arrhythmia. By the end of October, she was experiencing congestive heart failure.

“One day she came home from school and she couldn’t even get up the driveway because she couldn’t breathe. She sat at the edge of the driveway crying,” Deborah said. “Between October and November, her heart deteriorated so quickly they were telling me she was going to have to become a permanent resident of the hospital.

“There was nothing they could do except give her a new heart.”

Experts in neurology, hematology and cardiology all worked together at Children’s Hospital to keep Jennifer alive until a donor match could be found.

It is a complicated procedure: Location, size and blood type all play a role. Two potential donors were initially turned down and Jennifer began to fret.

Then, on the day before Thanksgiving, the phone rang. It was Dr. Berger. He had a four-word message: “We have a match.”

“From the day she was listed we had a back pack by the front door,” Deborah said. “We grabbed our stuff and out the door we went.”

On Nov. 23 – her mother’s birthday – Jennifer received a new heart.

“She is the poster child for determination,” said Osbourn Park nurse Rhonda Blanks. “She’s dealt with this for so long. This is a whole new experience for Jennifer.”

The days immediately following surgery were still rife with peril. Every post-operative biopsy has indicated that the heart is functioning perfectly, but there have been other complications.

Anti-rejection medication caused her kidneys to fail and her weakened immune system eventually rebelled.

“Everything was going great and then all hell broke loose,” Deborah said.

In rapid succession, Jennifer also suffered a bacterial infection, stroke, seizure and collapsed lungs.

She described it as “the scariest thing I’ve ever experienced in my life.”

But Jennifer continued to persevere.

She spent 10 days in the cardiac intensive care unit, celebrated her 17th birthday in a hospital bed and was pampered with balloons, two cakes, Carvelle ice cream and a new stuffed animal.

An entire wall of her hospital room was covered with messages left in an online care page. Another was filled with get well and birthday cards.

One entry from the care page was especially meaningful to Jennifer because it came from her close friend, Crystal Pritchett. It read: “Happy, Happy Birthday. Hope you can have some fun today. We can’t be with you in person but in mind and heart you are with us all the time.”

That message and hundreds of others are preserved in what her mother describes as a “transplant box” – a keepsake that also includes photographs from Jennifer’s hospital room, her stitches, external pacemaker wires and photocopies of her x-rays.

Deborah kept virtually everything associated with Jennifer’s transplant. Some items have fond memories attached; others are too frightening for Jennifer to look at just yet.

Right now, she’s content to look ahead rather than back.

“Getting a new organ is like meeting a new person. I’m still trying to figure out what it does and how it works and it’s trying to figure out how I work,” she said. “I guess that’s why they call it rejection when it doesn’t accept you.”

WHAT DO I WANT TO DO?

The relationship between heart and recipient is complex, but so far there have been no signs of rejection.

After spending virtually every minute by her daughter’s side since November, Deborah Hedrick has returned to her job as a planner for the Fairfax County government.

And on March 1, Jennifer went back to school.

“I felt like I was a freshman again,” she said. “People had a lot of questions about what happened. It was like having to give a big speech in each class.”

Jennifer doesn’t have all the answers. But she knows that a lot of people care about her.

When her illness forced her to withdraw from Advanced Placement classes and then eventually from school in November, she received tutoring at home. She even completed a literature assignment by reading Chaucer’s Canterbury Tales in the hospital.

“Jennifer is determined she’s going to make it. She is such an inspiration to people,” Blanks said. “She’s a very strong person considering everything she’s gone through. Getting a new heart has just changed her whole outlook.”

For now, milestones are measured in tiny increments – “week-by-week rather than day-by-day,” her mother explained. But, gradually, Jennifer is making plans.

In between physical therapy sessions, she’s posed for a senior picture, received her cap and gown for graduation and been hired as a receptionist at Mobile Ortho and Rehab in Manassas. In May, she’ll attend Forest Park’s senior prom with her boyfriend, Brendan Smoot.

“Brendan is a great guy. I confide everything in him,” Jennifer said. “He’s my best friend.”

Her two other confidants, Pritchett and Erin Davis, attend OP, which is why Jennifer was adamant about going back to school.

She’s spent three days a week in physical therapy building leg strength and gaining stamina, refusing to let little stumbles set her back.

“The huge motivation was getting back to school,” physical therapist Lois Masiello said. “She’s got such a wonderful attitude. She challenges herself every day. Getting off the sofa, being able to get in and out of the shower and standing up to brush her teeth are things that we all take for granted. Jennifer had to learn how to do all of that by herself again.

“She’s a very strong-willed individual. On the second day of therapy she fell down the stairs and she still wanted to continue. That says a lot right there.”

It says even more that Jennifer was granted a wish from the Make-A-Wish Foundation but isn’t quite comfortable accepting it.

“I just don’t need it,” she said. “There’s just one thing that I wanted and that’s a new heart and I got it.”

Through the miracle of medicine, Jennifer is finally in a position to make her own wishes come true.

There’s so much she wants to do that she’s made a list.

On a bookcase in her room, a shelf full of favorite books – Harry Potter, Sense & Sensibility, Journey To The Center of The Earth and The Royal Book of Oz, among others – need to be dusted off again and dozens of journals tucked away under the bed require new entries.

Propped next to her computer is a case of 100 color gel pens, a gift from the nurses at Children’s Hospital, that hasn’t been used yet. Jennifer is excited to see what she can create.

“I like to draw people,” she said. “Right after the transplant I did a lot of rough sketching.”

Her most recent sketch of Tinker Bell was inspired by an upcoming vacation to Disney World.

Until then she’ll begin making plans for college and possibly climb a mountain. One day, she wants to run five miles.

“No reason,” Jennifer said. “Just because I can.

“It’s like an artist with a blank canvas. I’m thinking very hard of what I want to do. I have a whole life in front of me. What do I want to do? I can live my childhood now.”