Skip to navigation

What we're up to

news News Wednesday, December 13, 2017 Wednesday, December 13, 2017 5:14 PM - Wednesday, December 13, 2017 5:14 PM

An entire family of patients finds hope and healing at Shriners Hospitals for Children

Dad, daughter and two sons are all patients of Shriners Hospitals for Children

An entire family of patients finds hope and healing at Shriners Hospitals for Children

Sam was born with Marfan syndrome, a genetic disorder that affects the body’s connective tissues. Connective tissue holds all the body’s cells, organs and tissues together. It also plays an important role in helping the body grow and develop properly. Because connective tissue is found throughout the body, Marfan syndrome can affect many different parts of the body as well. Features of the disorder are most often found in the heart, blood vessels, bones, joints and eyes.

According to the Marfan Foundation, about one in 5,000 people have Marfan syndrome. About three out of four people with Marfan syndrome inherit it, meaning they get the genetic mutation from a parent who has it.

Scoliosis is a symptom of having a connective tissue disorder and is common in individuals present with Marfan syndrome characteristics. At the age of 14, Sam had a successful spinal fusion surgery performed at Shriners Hospitals for Children — Chicago. As Sam continued to grow during his teen and adults years, he developed, remained healthy and encountered minimal additional effects from Marfan syndrome. He played every sport available at the small Christian school he attended and achieved all life’s major milestones.

Sam and Carla married in 2000 and were under the impression that Marfan syndrome skipped a generation. Due to health issues also present on Carla’s side they understood that it might be difficult for them to have children. When the couple found out that they were pregnant with their first child, Jadon they were beyond elated. Shortly after birth they recognized that Jadon presented with characteristics of Marfan syndrome.

Jadon was 14 months old when a local orthopaedic doctor noticed a curve to his spine. His parents knew right away that he might require extensive medical care as he grew. Due to Sam’s medical history, and his positive experience and outcome as a patient at the Chicago Shriners Hospital, Sam and his wife reached out to the Shriners Hospital closest to their home – Shriners Hospitals for Children Medical Center — Lexington, in Kentucky. "As a parent you don't want to ever see your child suffer, but it's comforting knowing that they are receiving great care, in the best place possible with the greatest doctors, nurses and therapists we have ever met," said Sam.

Henry J. Iwinski, Jr., M.D., chief of staff and pediatric orthopaedic surgeon at Shriners Hospitals for Children Medical Center — Lexington confirmed Jadon’s diagnosis of scoliosis, a sideways curvature of the spine. “Dr. Iwinski is definitely held in high esteem in our immediate and extended family. The grandparents/aunts/uncles are all fans of his! They have seen how much he has invested in our kids and we are all so very thankful for him,” said Carla.

Without knowing how quickly Jadon’s curve may progress, the Barth family continued to pursue their calling of being full-time missionaries in the Czech Republic. “We left the states in April 2005 and moved to Prague, CZ. Jadon explored the city right along with us. Our family was learning the Czech language, teaching English as a second language to the community, meeting people and making friends,” said Carla. “All the while a couple of times a year, I would return to the states with Jadon to be checked by Dr. Iwinski.”

Sam and Carla were blessed with the arrival of their second child in 2007, a little girl by the name of Abby. While in the states for a check-up on Jadon with Dr. Iwinski, he noticed that Abby’s type of crawling was not considered ‘normal’ and since she also presented with characteristics of Marfan syndrome, Dr. Iwinski ordered a hip X-ray. The results showed that Abby had hip dysplasia and skewed feet. Abby was one year old at the time. Approximately three years ago at the age of 8, Abby was diagnosed by Dr. Iwinski with scoliosis. To date she has not required surgery or bracing, but continues to be monitored closely.

Between the ages of 3 to almost 8, Jadon wore four different thoracolumbosacral orthoses (TLSO). This is one of two main types of bracing used to help treat scoliosis. The brace was designed to try and hold the curve by slowing down the progression while Jadon continued to grow and develop.

At 8 years of age, Jadon underwent his first surgery where he received a vertical expandable prosthetic titanium rib (VEPTR). VEPTR is a curved metal rod that is surgically attached to a child’s ribs, spine or pelvis using hooks on both ends of the device. The VEPTR helps straighten the child’s spine and separate the ribs so their lungs can grow and expand as the child grows. Once VEPTR was inserted, Jadon had to undergo a surgery roughly every six months to expand the rods as he continued to grow. In the spring of 2015, at the age of 12, he had a spinal fusion surgery similar to his father’s.

“I know how scary it is to be given news that you would rather not hear, but there is comfort in knowing that there is a place that will partner with you on your journey and will always be working hard to ensure the best outcome possible for your child,” said Carla as she reflected on the many surgeries Jadon has undergone throughout his life.

Today Jadon is 14 and continues to receive specialized medical care from Dr. Iwinski for scoliosis, tendon issues in his foot, which cause him to need an orthotic insert, and any other complications or diagnoses due to Marfan syndrome.

Sam and Carla’s blessings continued as they welcomed their third child, Hudson, into their family. At about 3 months old, Carla noticed that Hudson presented with the "rib hump" that one might normally see on an infant’s back when they have a curve to their spine. Due to the family history, Dr. Iwinski immediately ordered X-rays. The X-rays came back normal and Hudson was confirmed at the time at not having scoliosis. However, Hudson has his own set of medical issues and receives care for benign rolandic epilepsy.

“You know how you see those DIY projects where people list a few things they are thankful for? My list would be, ‘Faith, Family and Shriners Hospital’,” said Carla.

One might think that the Barth family sees limits to their abilities or is unable to enjoy life to its fullest. However, that is not the case for this family of Shriners Hospitals for Children patients! The Barth family has participated in a variety of sports and activities as individuals and as a family. “We have learned what works for us and gone with it. As a mom, I am always learning what works and what doesn’t,” said Carla when describing her children’s’ physical abilities.

The Barth family has spent a lot of time at Shriners Hospitals for Children and over the years have become extremely connected with the staff and Dr. Iwinski. Abby was recently given a homework assignment regarding the definition of a hero. The first part of the assignment described a hero as; “Heroes are often people with great character. Many people with great character are honest. Honest people tell the truth, even when it is hard to do. Someone with great character may also be compassionate. A compassionate person cares about others and works to help them.” The students were asked to read the definition and in the space allotted write about their hero and why the student selected that individual.

Who do you think Abby chose as her hero? Dr. Iwinski, pediatric orthopaedic surgeon at Shriners Hospitals for Children Medical Center — Lexington! The very doctor that has compassionately and graciously cared for her and her brothers all their lives.

Abby’s answer to her homework assignment read; “My hero is Dr. Iwinski. He works at Shriners Hospitals for Children. Dr. Iwinski helps my brother and me with our scoliosis. He is very caring and makes me feel safe. Dr. Iwinski also travels to foreign countries to do surgeries for kids with bone problems. I am very thankful that he helps me and others. Not only is Dr. Iwinski my hero, he is my superhero!”

Shriners Hospitals for Children are places where hope and healing meet. Our staff is dedicated to improving the lives of children by providing pediatric specialty care in the areas of clubfoot, hip disorders, scoliosis, hand and upper extremity disorders, limb deficiencies, spina bifida, cerebral palsy, osteogenesis imperfecta, neuromuscular disorders, sports injuries and other orthopaedic-related conditions with a goal to restore each child physically, emotionally and socially. All care and services are provided in a family-centered environment, regardless of the families’ ability to pay.

“Our family has ALWAYS felt taken care of. I personally admire Dr. Iwinski and what he does, day in and day out,” said Carla. “I know I have thanked Dr. Iwinski every time he has gotten up to leave the room, but I don't know how I could ever truly express how thankful we really are to him and Shriners Hospitals for Children.”

The Barth family is not finished with their medical journey. As Jadon and Abby (and Hudson if needed) continue to grow and develop, Lexington Shriners Medical Center will be with them every step of the way. Jadon and Abby continue to be monitored closely and receive frequent checkups. Both continue to present with medical conditions that need assistance from Dr. Iwinski and the specialized staff of medical professionals at Shriners Medical Center. While the journey may be long and hard at times their outlook on life continues to remain positive and uplifting as they all have big plans for their future. And just like their father they will continue to stay on whatever path is necessary to achieve all of life’s milestones and experiences.

Family of patients

Amazon tracking pixel