Flesh-Eating Disease Battle

My name is Chelsea Gornieiwcz, and I am a survivor of Necrotizing Fasciitis. What began as a simple sprained ankle turned into a nightmare for me and my family. August 17, 2013, at the age of seventeen, I was rushed into emergency surgery and subsequently diagnosed with Necrotizing Fasciitis, "flesh-eating disease." After thirty-nine days in the hospital, nineteen operations, and numerous ambulance rides to Sentara Leigh Hospital’s Wound Healing Center for Hyperbaric Oxygen therapy my life and leg were saved. My parents are now faced with thousands of dollars in medical bills. And to top it off my mom lost her job which was our family’s primary source of income, as my dad, a paraplegic on SSDI, can only work part-time. As hard as it is to do this I am asking for help as I can’t stand to see my parents struggle and worry about the financial burden anymore. I’m not even sure if they would approve of my doing this but I am determined to do whatever it takes to help. As I mentally cope, I believe this is a part of God's plan for my life, but it’s still extremely difficult for me to get used to my new normal. I want to give back to my parents for the tremendous love and support they have given me throughout my ordeal. A prayer, a penny, or even a share on social media makes a difference. Let’s all help raise awareness about this disease as it has been increasingly prevalent in the Chesapeake Bay and many bodies of water throughout the United States and other countries. I want to help prevent this from happening to anyone else. Thank you in advance for your support. My full story is below.
God Bless.
~Chels

My Junior Ring Dance in 2012

Me on a mission trip in Togo, West Africa - July, 2012

Me and my friends outside church - October, 2013




My leg before going to the ER on August 17, 2013



Me and my beutiful sister Brianna 

Me and my dad on a date in the hospital cafeteria 


My mom never left my side

"A picture paints a thousand words"


Me and my family in my hospital room


Both sides of my leg were cut open like this






This is my leg after all the operations and skin grafts

My first attempt a walking late September, 2013

PT session trying to regain as much motion in my ankle joint as possible early September, 2013

FULL STORY
Chelsea Strong
Thirty-nine days. That’s how long then seventeen-year-old Chelsea Gorniewicz spent in the hospital last year after nearly losing her leg to necrotizing fasciitis. The former athlete doesn’t call her ordeal a problem, a but blessing.

It’s not the first time the family has dealt with a life-changing event. John Gorniewicz, Chelsea’s father, was paralyzed in 1985 in a snow skiing accident. Chelsea’s ordeal started in late July 2013. A dedicated Junior Olympic volleyball player for the Atlantic Wave Volleyball Club, Chelsea was at practice when she came down on her left leg and twisted it, tearing her ACL and meniscus. She went to the emergency room, got an immobilizer to wear throughout the day but in a stroke of bad luck, she then sprained her right ankle going up the stairs. While recovering, she scratched a mosquito bite on her ankle, which led to a small wound. Although her ankle and foot swelled and was tender, the fit athlete thought it was just a sprained ankle.

During this time, John and Lynda Gorniewicz were on vacation. Seeing Chelsea’s swollen ankle upon their return, Lynda texted a photo to a family friend and doctor, who urged them to go to the hospital. The wound was much worse than anyone could have imagined. According to Lynda Gorniewicz, “An x-ray showed gas bubbles in the subcutaneous tissue which isindicative of a serious bacterial infection. She was very sick with a high white blood cell count and sepsis. Within a few hours she was in emergency surgery, doctors trying to save her leg and ultimately her life. The diagnosis was necrotizing fasciitis, more commonly known as “the flesh eating disease.” She spent thirty-nine days in the hospital enduring nineteen surgeries, numerous blood transfusions, and many ambulance rides to Sentara Leigh Hospital’s Wound Healing Center for hyperbaric oxygen therapy.

She lost quite a bit of tissue in her lower leg, three out of four cavities of calf muscle, two tendons, a vast amount of nerves and all cartilage in her ankle. The wound encompassed both sides of her right leg from the knee down all the way to the toes. The nerve damage is contained to the tops of her toes and foot and continues up the first quarter of her leg. “It’s nothing short of a miracle that she didn’t lose her leg, which was a strong possibility early on. Doctors presume the bacteria entered the skin at the site of irritated mosquito bite on her ankle.”

“The hyperbaric treatments were especially difficult because she’s claustrophobic,” Lynda Gorniewicz said. At one point Chelsea was having surgeries every other day and on the off days would go via ambulance to Sentara Leigh for hyperbaric oxygen therapy. “The twenty-five-minute bumpy rides were extremely painful but the EMT’s were remarkably kind and gentle and took the utmost care of Chelsea. They treated her like family,” her mother said.

Dad, I Got This
“The family has always been very open with each other because of her father’s health problems,” Chelsea said. Lynda and John were married in 1989 in Rhode Island after he was paralyzed. “The question many people have asked me throughout the years is, ‘Did you know what you were getting into?’” Lynda Gorniewicz said. “My reply has never changed, “I didn’t see the wheelchair. I just loved him and knew we were supposed to be together.” With the help of in vitro fertilization, the couple was able to have two daughters, Chelsea and Brianna, whom they call their miracle children, in 1996 and 1997, respectively.

In 2003, the family was gearing up for a move from Rhode Island to Virginia Beach for John Gorniewicz’s job when he was diagnosed with a staph infection. The family continued with the move, but when rounds of antibiotics didn’t seem to resolve the problem, he visited doctors at Sentara Virginia Beach General Hospital. Along with the infection, he was diagnosed with Charcot joint of the spine, a condition in which the spinal cord had separated below the injury that paralyzed him. “He was still on antibiotics for the staph infection and now would have to have the titanium rods taken out his back, and replaced with longer ones in addition to hooks and screws to re-stabilize him. If that wasn’t enough to handle he also developed a pressure sore that needed specialized treatment,” Lynda Gorniewicz said.

After six weeks of rehabilitation, doctors discovered that one of the rods was out of its socket; so another total spinal fusion was necessary along with a hip reconstruction. For the weight lifter and athletic man, the new setback was devastating, his wife said. “By that time, we had bought a house and the girls were entering first and second grade. Our life got a little bit crazy. Looking back, since moving here eleven years ago, he’s had two total spinal fusions, two hip reconstruction surgeries, and many infections needing intravenous antibiotics. He really has not been well for the majority of the time we’ve lived here. ”Because of his health issues and prolonged rehabilitation, he was unable to work and had to go on disability. He now works part-time at OneLife Fitness. So hospitals, health problems, and struggles are something this family is all too familiar with.

In the ICU on August 18th, Chelsea said she sensed something was off, even through the haze of illness, antibiotics and pneumonia that she had contracted. She had twenty-three hours before her organs would have shut down from the excessive amount of white blood cells in her blood stream due to the infection if left untreated. “There were all these machines around me, and my mom was sitting in a chair beside me, and I told her, ‘I feel like there’s something you’re not telling me,’ “At that moment my dad wheeled through the door, looked down and then looked me straight in the eye and said, “You’re going into this next surgery, and the doctors are most likely going to have to amputate your leg from the knee down.” At that moment, I felt an overwhelming sense of peace come over me. I replied, “Dad, I got this.”

Doctors came out with good news; they did not need to amputate, but she was still critical. “I’ll never forget one of the surgeons’ comments after one of the many surgeries,” John Gorniewicz reflects, “He said, we have miraculous luck on our hands.” I thought, “I definitely agree with the miraculous part not so much the luck part.” She had this.

Her father’s injury also helped him and Chelsea connect throughout her ordeal. She has cried to him many times, and remembers saying, “Nobody else understands, you’re the only person that understands what’s happening to me.” “Sometimes I wish people could understand how I feel, but I am blessed to have been given the parents I have,” Chelsea said. “My mom is a caretaker and very understanding; she’s loving and you can tell that because she met and married my dad after his accident. My mom understands my physical limitations and how to help me cope... my dad is able to help me emotionally.”

The New Normal
Finally, on October 3, Chelsea was released from the hospital. “I came home and just began getting used to my new normal. My bedroom is now in the living room,” she said. “Mom stayed with me every night in the hospital. I think it was really hard on my sister, I was in surgery on her sixteenth birthday, August twenty-second, it was tough for her to see me in that state.” Simple things, like walking up the stairs, or even running errands, are now an ordeal. “I can only be on my foot for thirty minutes to an hour. Just going to the grocery store that would normally take fifteen minutes will take my family an hour. ”According to her mother, “The first few months home was quite overwhelming with appointments to coordinate and phone calls to be made on top of adjusting to a new normal. Physical therapy helped tremendously, albeit painful, but she worked very hard and pushed herself to her limits.

Although Chelsea wasn't well enough to attend school her senior year she still graduated with honors working from home with a homebound tutor provided by the Virginia Beach City Public Schools. She began Old Dominion University last fall and plans on pursuing a degree in nurse anesthesiology. She’s looking forward to getting her driver's license and will use hand controls as she doesn’t have the capacity to use foot pedals due to the loss of mobility.”

Because she has no cartilage in her now-arthritic ankle, Chelsea needs to wear a leg brace to bear any weight on her leg. The family has already purchased three custom-made braces, (Patella-weight bearing ankle-foot orthotic), which haven’t been of good use as they have rubbed against the skin grafts which are on either side of Chelsea’s ankle causing skin breakdown. “Our medical insurance doesn’t cover durable medical equipment or prosthetic orthotic devices so it’s been quite discouraging having spent over $6000, out of pocket, on three braces only to discover they weren’t going to work out.” Lynda Gorniewicz stated. The brace is designed to provide stability and safety as well as extend the time before her ankle fuses, which could lead to confinement to a wheelchair. Because of the bruised and severed nerves in her leg, any steps she takes feels like walking over hot, broken glass. At times it’s excruciating. “This could be the extent of my recovery, but I could also recover more. It’s painful to walk on the arthritic ankle, because it’s bone on bone, and is rubbing down, like rocks turning into sand.”

“When people hear our story, the first reaction is to say how sorry they are. But I grew up in a home where abnormality was normal. My dad is in a wheelchair, but is not in any way handicapped in our eyes. It brought the family together, put into perspective, for us, and teenage friends, to really step back and look at what you’re spending your time on, what you’re giving your attention to, especially as a young adult, who you are and who you’re becoming. It’s also brought the sisters closer together,” Chelsea said.

“When I was first out of hospital, I laid in bed and cried myself to sleep. It was especially hard because it was my senior year. It was hard to sit here at home, cut off socially for so long, and everyone going on with their lives and say you’re in their thoughts and prayers, but you’re so, so lonely. I deleted my Facebook and Instagram accounts three different times because it was too difficult for me to see everyone applying to colleges while I was going to physical therapy and doctor appointments.”

The injury also took away Chelsea’s ability to play volleyball, a sport in which she’s loved and played since age eight. She had hoped to go to college on a scholarship for the sport. “One of the few visits I remember was my volleyball coach. He stayed for a few hours, but I wasn’t sober enough to realize the severity of my injury,” Chelsea said. “The fact that my volleyball career was over didn’t hit me until January. It was kind of a slap in the face.” It’s one of manythings that have been hard on the former athlete with dreams of working in the medical profession. There have been many tear-filled nights, “just thinking about prom, not being able to wear heels, or not being able to dance at my wedding,” Chelsea said.

A Family’s Prayer
“Our prayer, as we move forward, is for God to continue providing Chelsea with the strength and courage to overcome this. Chelsea is, by far, the bravest person we know. We couldn’t have made it through without the faithful prayer, love, and support of family, friends, neighbors, and our church family, and for that we'll be forever grateful. Whether you’ve partnered with us in prayer, participated in a fundraising event, or sent a card, email or text message of encouragement, it has made the impact of this ordeal much easier to bear. The list is endless... For the many doctors, nurses, specialists, and staff at Virginia Beach General and Sentara Leigh Hospitals, thank you. For the hospital administrators that made it possible for Chelsea to stay at VB General, thank you. For Michael and Gail Simone and our Spring Branch Community Church family, words could never express our gratitude for your support and generosity. For our friends who took over every single detail of our lives so we could be there for our sweet girl, thank you. For the many volunteers who donated to the “Chelsea Strong, Carry On” fundraising effort, thank you. For the professional staff at Medical Transport, LLC, who took extreme care in transporting Chelsea to and from hospitals, thank you. For The staff at Glasson Sports Medicine, especially Sandy Wasko, MPT, thank you. For Dr. Dawn Pfeiffer, Dr. Michael Rayno, Dr. Bogdan Neughebauer, Dr. John Williamson, Dr. Richard Demasi, Dr. John Alspaugh, Dr. Dirk Proffer, Dr. David Werwath, Susan Ruetzel, NP, Progressive Prosthetic and Orthopedic Services, our friend, Joe Lawson and the staff at Lawson Medical Prosthetics and Orthotics, and most especially, Dr. Zachary Fenn, whose decisive and aggressive approach early on made all the difference in the world, thank you. Each and every one of you will be forever in our hearts. I came across this quote and it reminded me, once again, just how blessed we are.”

“We live in a world in which we need to share responsibility. It’s easy to say, “It’s not my child, not my community, not my world, not my problem.” Then there are those who see the need and respond. I consider those people my heroes.” Fred Rogers

“I don’t think we understood this was going to be so debilitating. It has forever changed the way she will live her life.”

What the Future Holds…
“Chelsea's done quite a bit of research on regenerative stem cell treatment to replace the cartilage in her ankle, but the damage is just too massive for it to be a considered. She has discussed elective amputation with her surgeon and it seems more and more to be a reality for her. She is seriously considering it, and although it may sound cold, she's the perfect candidate. It ultimately comes down to what she and her doctor’s feel will give her the best quality of life in the long run. The severe chronic pain and lack of mobility are quite limiting and also very discouraging. We’ve been told that most people start to think about elective amputation anywhere from eight to twenty-one months after the initial injury and effort to save the limb and is generally prompted by chronic pain and significant function deficit. Once you’ve experienced the chronic pain and debilitating mobility issues you start to think there’s got to be a better way of life for her,” Lynda said.

Because she will not regain full use of her leg, the family applied for disability on Chelsea’s behalf and her application has subsequently been approved.

Chelsea saw her doctor on March 6th, her 19th birthday, at which time she received referrals to two highly trained surgeons who specialize in severe and complex cases such as hers.  

We traveled to Baltimore yesterday, March 18th for Chelsea’s appointment with Dr. Bradley Lamm at The Rubin Institute for Advanced Orthopedics. Dr. Lamm is also head of Foot and Ankle Surgery at the International Center for Limb Lengthening in Baltimore and has pioneered new techniques to help patients with unusual foot deformities. He came highly recommended and specializes in the treatment of extreme cases of debilitating foot, ankle, and lower leg conditions like Chelsea’s.

The appointment went well and we really like Dr. Lamm and his staff. He said he would love to help Chelsea save her leg and believes he can do so with an ankle and rearfoot fusion, and a realignment of the foot and leg. It can be done with minimally invasive external fixation and would only require an overnight stay in the hospital with PT beginning the next day. One of the goals is for chronic pain to be reduced which is the primary reason for either surgical option. The fixator would be worn for three months and once removed, she'd be in an orthopedic boot for a month. This surgery wouldn't hinder her from amputation in the future if it becomes necessary. She would not be able to run, or play volleyball, but would avoid amputation for the time being. He said in her particular case it was pretty much "apples to apples" and it is ultimately up to her. He specializes in ankle fusion and saving limbs, but did say that he sees no reason why she couldn't have a below the knee amputation which was one of our main concerns.

Dr. Lamm was in awe of all Chelsea's been through and said that after reading Chelsea's file and speaking with her doctors it's a miracle that she is here with us today. Listening to him speak of Chelsea's case was a reminder of just how blessed we are and feel absolutely certain God will guide us every step of the way as we determine what will give her the best quality of life in the long run.

On March 25th we see Dr. Joel Stewart, a Virginia Beach orthopedic surgeon with the Virginia Beach Institute for Sports Medicine. He, too, comes highly recommended and specializes in post-traumatic reconstructions to the foot and ankle. Dr. Stewart is a graduate of the United States Naval Academy and Harvard Medical School. His military background has given him a broad range of experience with complex cases such as Chelsea’s. Dr. Stewart is proficient in the Ertl method of amputation and teaches this method to orthopedic surgeons in Virginia Beach and the surrounding area. The Ertl method is a below-knee amputation technique in which a bone bridge is formed between the tibia and fibula with a portion of the fibula from the amputated limb forming the “bridge.”

We are very encouraged and feel extremely blessed to have such wonderful doctors available to us. Please keep us in prayer over the next few weeks as we enter into this new phase of Chelsea’s recovery and discern God’s will.    

Chelsea Gorniewicz can be reached at:
[email redacted] or [phone redacted]
Lynda Gorniewicz can be reached at:
[email redacted] or [phone redacted]