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The hardest decision for a parent: To amputate or not?

Braxton may be young, but he is mighty

The hardest decision for a parent: To amputate or not?

On the morning of August 21, 2017, a little family of three – Bree, Josh and their daughter, Hartley – welcomed two new bundles of joy into their lives, twin boys Braxton and Jackson. They were ecstatic, despite knowing how hectic life was about to become. Twin babies are challenging enough, but immediately after their birth, Bree and Josh faced the most difficult decision of their lives. Braxton was born with a difference that could not be ignored – part of the bone in his right thigh was missing.

Bree and Josh were now facing a much bigger challenge than balancing caring for twin boys and a young daughter. They had to decide whether or not to allow surgeons to amputate one of Braxton’s legs.

“This decision was the hardest decision I have made or will ever have to make,” recalls Bree. “I am making a decision that will forever change someone else’s life. This is why I was not going to stop until I had all of the information I needed, and most importantly found a doctor I felt most comfortable with overseeing his care.”

Braxton was born with right proximal femoral focal deficiency (PFFD). PFFD is a complex birth defect in which the upper part of the femur bone (in the thigh) is either malformed or missing, causing one leg to be shorter than the other. This difference causes functional problems with a child’s ability to walk and can stress other bones and joints in the body in an effort to compensate. Proximal femoral focal deficiency is an uncommon condition, with an incidence ranging from one case per 50,000 population to one case per 200,000 population. The severity varies from child to child.

There are several treatment options for PFFD, including limb-lengthening, amputation at different lengths, prosthetics and a host of different surgical procedures. There is no “one size fits all” approach to treatment for this condition, which is why it can be so difficult for a parent to make the right decision for their child, especially a child who is so young.

Braxton’s parents started researching and meeting with medical professionals the first day of his life. They wanted to gather as many opinions as possible until they felt comfortable making a long-term decision for him. They started by meeting with a local doctor and immediately began physical therapy, hoping they could turn his clubbed foot. After a few months of therapy, the local doctor made a recommendation for amputation of his leg at the hip, based on Braxton’s lack of progress and what was appearing on X-rays.

Bree and Josh immediately determined that they were not comfortable with this recommendation and made appointments in Florida and Baltimore for second opinions. Before they could even arrive for those appointments, Josh’s dad recommended they call Shriners Hospitals for Children Medical Center — Lexington. They followed through and made an appointment with Janet Walker, M.D.

“Dr. Walker picked Braxton up and held him at our first appointment. He seemed so calm with her! Our local doctor never even held him,” Bree said. “And, Dr. Walker was so knowledgeable about Braxton’s condition and the future journey we as a family would be facing. Those two things made us feel comfortable right away." This appointment, and those following, helped Bree and Josh become more comfortable with the idea that Dr. Walker’s recommendation to amputate just part of Braxton’s leg was the right one for him and his future.

“We never amputate more than necessary and always want to leave as much of the limb as possible, as it provides a better prognosis with mobility and growth in the future,” explained Jennifer Rainwater, RN, care manager at the Lexington Shriners Medical Center.

Bree states that the recovery process for Braxton was harder on her than on him. The day Braxton returned home in his cast, Bree recalls how he pulled himself up and was crawling to keep up with his brother and sister.

“As a mom, knowing this is a condition he will deal with his entire life, I wanted to set Braxton up for success from the beginning, and this is exactly what the team at Lexington Shriners Medical Center is giving him,” she said.

Braxton is now 18 months old. He recently received his first prosthetic leg, custom fabricated for his size, needs and current mobility, by Chris Burke, a prosthetist at Pediatric Orthotic and Prosthetic Services – Midwest, LLC, at the Lexington Shriners Medical Center. Learning to use the prosthetic leg has been challenging for Braxton due to his young age and how mobile he is without the artificial limb. His parents have been creative in helping Braxton become more comfortable with the prosthetic leg by using a reversible walker, holding his hands over his head and letting him move his leg back and forth, teaching him to drive a power wheels car and showing him how to use his leg to push down on the pedal to make the car move. “I had a super-proud mom moment, when he pushed down on the pedal on his power wheels with his prosthetic for the first time. He had the biggest smile on his face as he realized what he had just done all by himself,” said Bree. 

Braxton’s two biggest fans, his siblings, are always within reach to help. Hartley and Jackson will bring him things or carry things for him so he doesn’t have to crawl, and work hard to make him laugh. As the older sister, Hartley is extremely nurturing. She reads to her brothers and plays with Braxton, as she sees no difference in him.

“While we all worry for him, Braxton is very strong and happy. I strongly believe that God knew which of my three children could confront life with PFFD head-on and always have a smile on his face,” Bree said.

Bree would like to encourage other moms facing this decision by sharing this advice: “You know your child better than anyone. No matter what, this will be the hardest decision you will make. Naturally, you will worry and fear for your child. However, don’t leave a stone unturned regarding their care, as great options can be just an appointment away. Surround yourself with the best! Enjoy the milestones and it's OK to cry!”

Braxton on playground