Watching Laura and Ashley Bone laugh and joke as their puppy Lexi runs around their living room, it’s hard to imagine either of the fun-loving, bright-smiled sisters having a care in the world.
But life wasn’t always so happy for the Bone family. On June 21, 1993 Laura Bone was welcomed into the world five weeks early. Ready to greet her were mom and dad Dianne and Michael and her 3-year-old sister Ashley. But as soon as Laura was born, it was clear to doctors and her parents that something wasn’t right. Laura’s early arrival had happened for a reason. “I went into labor early because Laura was not well,” said Dianne.
At just 4 pounds, 4 ounces, little Laura had a big list of complications, the most pressing being a Large Ventral Septal Defect (VSD) — a large hole in her heart. It was clear that Laura needed help.
Soon after being born at St. Lawrence Hospital, Laura was taken to Sparrow Regional Neonatal Intensive Care Unit (RNICU). Facing complications of a spinal headache, Dianne was not able to travel with her daughter. With both his wife and newborn daughter in different hospitals, Michael traveled between his girls, spending as much time with them as he could. In the meantime, Ashley was taken care of by her grandparents.
“We tried to keep everything as normal as possible [for Ashley],” said Dianne. Thankfully Dianne’s condition improved. Laura’s, however, continued to decline. Through multiple tests, doctors were able to rule out some of the conditions they feared plagued Laura at birth. Still, Laura continued to lose weight and was unable to consume even one ounce of formula and in turn was not able to leave the RNICU.
“I went [to the hospital] everyday, all day,” said Dianne.
Although it was determined that Laura did in fact have a VSD, doctors assured Dianne and Michael that Laura could wait until she was older to have repair surgery. Eighteen days later, with Laura able to eat, she was released from RNICU and arrived home. But things didn’t improve. Laura would sleep long periods of time and she was failing to gain weight. Dianne and Michael realized that waiting until Laura was older to do heart surgery was not an option.
In November the Bone family traveled to Mott Children’s Hospital at the University of Michigan in Ann Arbor to meet with a pediatric thoracic surgeon. The exam proved what Dianne and Michael suspected: surgery would have to happen much sooner than expected. The doctor explained to Dianne and Michael that on a scale of one to 10, the hole in Laura’s heart was a 20.
“We didn’t realize how big the hole in her heart was,” said Michael. Following that information Dianne and Michael began to realize what a fighter they had in Laura.
“She never looked like she was in distress,” said Michael. “She did have that strength.” As with everything in her short life so far, the heart surgery Laura had as an infant was not what doctors expected. Nine hours after doctors repaired not only the large hole in Laura’s heart, but several smaller holes, surgery was over. Twelve hours later Dianne and Michael were able to see their daughter. Covered in tubes, IVs, external pacemakers and a ventilator, the Bones barely recognized Laura. Still, the family kept strong.
“You don’t think about how you deal with it, you just deal with it,” said Michael.
As a result of her first surgery Laura suffered complete heart block and 10 days later received herfirst pacemaker. What followed was a series of complications, progress and more complications resulting in an extended stay at the hospital. On Jan. 13, nearly three months after her first surgery, doctors discovered that Laura’s airway was 99 percent blocked and Laura was forced to have a tracheotomy.
Because of the trach, which was inserted into Laura’s throat to ease her breathing, the Bones received intense training on how to handle a baby with such a sensitive medical device. Finally on Feb. 8, 1994, Laura was able to come home, but only after the Bones agreed to have 24-hour inhome nurse care. Aiming to keep some sort of normalcy in Ashley’s life, Dianne negotiated that time down to 19 hours, giving the family some alone time between 4-9 p.m.
During the following months, along with in-home nurses, a team of specialists cared for Laura.
Teachers from the Ingham Intermediate School District, physical and occupational therapists and speech pathologists worked with Laura to keep her up-to-speed the best they could. In addition Dianne requested “homework” from the specialists to ensure that Laura was getting all of the help she possibly could.
“She did really well with this,” said Dianne. “It was amazing the progress she made.” By 12 months old Laura was 15 pounds and began walking.
“She surprised everyone. She really made up for lost time,” said Dianne.
Still, there were setbacks. After a severe allergic reaction to a certain formula, allergy specialists determined that Laura is allergic to milk, milk proteins, dairy products, eggs and all nuts and shellfish. At 14 months old a huge success for Laura came when doctors were able to successfully remove her trach — no easy feat said Dianne, considering very few removals are done each year, let alone successfully. After 10 intense days Laura was once again released home, where she was greeted with a Trach Coming- Out Party.
At 3 years old, when Laura asked her mom if something was fuchsia, it was clear to all of the specialists helping her that she was just fine. By kindergarten Laura was as healthy and normal as she could be.
“I never really realized I was different because that’s all I ever knew,” said Laura.
However, by the end of the school year, doctors told the Bone family that Laura’s pacemaker, which she had had since she was a baby, needed to be replaced. Although she was forced to miss the last month of kindergarten, her class paid her a visit at home after a successful pacemaker replacement.
While her newest pacemaker was supposed to last at least five years, Laura had another setback insecond grade when her pacemaker was one of 50 out of 250,000 recalled. After about four weeks off of school, Laura was able to return. Again, right before fifth grade during a routine pacemaker check, doctors discovered fractured wires, forcing yet another replacement.
Trying to allow Laura to live as normal of a life as possible, Dianne and Michael made sure she was involved in various activities like the University Club Swim Team, volleyball and her high school cheerleading team at Haslett High School. Of course as she gets older Laura learns more about her history.
“My parents tell me stories and it’s like ‘holy crap that really did happen to me,’” said Laura. By her sophomore year at Haslett High School, Laura realized she had to give up cheerleading because of the physical limits having her pacemaker in her shoulder presented. With free time in her schedule Laura got a job and began to think about another venture. Soon enough she came to Dianne and told her she wanted to start her own endowment fund to help other families dealing with pediatric heart problems.
Michael and Dianne met with representatives of the Sparrow Foundation and formed the Laura Marie Pediatric Heart Endowment Fund last year. The fund held its first fundraiser in March. “(I want) to make families more aware of what they’re going into,” said Laura.
Along with creating the endowment fund, Laura’s health problems have also inspired both her and her sister Ashley, currently a student at Grand Valley State University, to enter the medical field. As a junior at Haslett High School, Laura is part of the Capital Area Health Education Program. Her goal is to work with children — “We can be scar buddies,” joked Laura.
“We’ll be learning stuff in class and I’ll be like ‘I already know that,’” said Laura, who will likely have to have her pacemaker replaced before heading off to college. It’s not just the scars on her body and the pacemaker keeping her heart pumping that make Laura different, say her friends and family — it’s her attitude.
“(I) make the best out of everything,” she said. She doesn’t sweat the small stuff and she keeps herfriends from doing the same. And she never, ever gives up — with good reason.
Although she was once told she was dependent on her pacemaker at all times, when she was 14 years old doctors discovered that, while resting, Laura has a heartbeat of her own.
“Never stop thinking positive,” said Laura. “Even though it’s hard … never give up. Always keep pushing.”
Her success keeps her family going as well. “She’s a survivor. She’s been fearless,” said Dianne. “If we can make it through that, we can make it through anything.”
“She is a true inspiration,” added Michael.
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