A Spine of Steel and Heart for Riley

January 29, 2020
Topics: Riley Kid Story

Rachel Bakx

Rachel Bakx has plenty to celebrate for her 17th birthday. The Lawrence North High School junior is a standout student and is back to the activities she loves following her latest round of surgery at Riley Hospital for Children at Indiana University Health. Rachel also helps her school fundraise for Riley through the Lawrence North Dance Marathon. We sat down with Rachel and her mother, Jennifer, to talk about their experience at Riley.

You recently underwent back surgery at Riley, but when did you first start receiving treatment?

Rachel: I have been under the care of many Riley doctors since the day I was born. Being born with a cleft lip and palate, I was very familiar with the skilled and compassionate care of Riley doctors through the craniofacial clinic as well as several other Riley departments. 

When I was 13 years old, one of my doctors noticed a curve in my spine and referred us to the Riley Orthopedic department where we met Dr. Karen Myung. It was determined that I had congenital scoliosis. Dr. Myung determined that I was born with Spina Bifida Occulta, which caused several of my vertebrae to be misshaped. These misshapen vertebrae caused curves in my spine, which had gone unnoticed until my teenage years. Dr. Myung's expert knowledge and confidence immediately set our minds at ease as we knew I was under great care. As I grew older, we continued to monitor the curve in my spine. By age 16, I had two curves that continued to progress, the upper one measuring 58 degrees, and the lower one 30 degrees. My condition not only made me uncomfortable much of the time but also threatened my lung function. It was determined that I was a candidate for a spinal fusion surgery, where they straighten the spine using rods and screws. We knew that this surgery was very invasive and intense. Dr. Myung's clear explanations, desired outcomes and shared compassion enabled my family to place me in her care with confidence and relative comfort.  

After a successful surgery, I received amazing care at Riley from a wonderful team of doctors, nurses, physical therapists, and a specialized pain management team to help me through the initial recovery phase. One of my favorite memories is my physical therapist right after surgery. He had a great sense of humor. He also had a great manner of motivating me to get out of bed during the first few days even when it was painful. Though the initial weeks of recovery were difficult, I knew that I had access to a great team available to help in any way I needed. I am now able to get back to the activities I love, including playing soccer, and I continue to be a physically active teenager. I am very grateful for the care I received during this time and for the ongoing care I receive from Dr. Myung and the Orthopedic Department.

Rachel’s mom Jennifer: Now that she is 17, we have a different perspective — a global appreciation for everything we’ve been through here at Riley. When Rachel was born, I chose to bring her to Riley because I knew they had a team approach for the craniofacial center. You bring your child for the visit and all the departments that need to deal with cleft open lip and palate care come to you. It was very coordinated and organized. Then as she grew and hit middle school, we always had some side concerns about growth, so we worked with doctors at the endocrinology department. That was phenomenal because they zeroed in and started a treatment that made a world of difference in Rachel’s growth and development. 

What stands out most about your treatment at Riley over the years? 

Rachel: I always like how involved the doctors are. For example, after my spinal surgery, Dr. Tholpady, who had cared for my cleft palate for years, came to visit me just to see how I was doing. I thought it was really special that he took the time to visit me. Another thing that makes Riley stand out is that they treat me like I am an adult. Now that I’m a teenager, my doctors help me take control of my own treatment. I’ve always been very trusting of my doctors because they know what’s best. I put full trust in my doctors. What people may not realize is how much the doctors actually pay attention to their patients, or how they’re focused on the kids and not just what the parents want from them. For me, my doctor always looked at me, asking ‘What do you want?’ instead of asking my mom.

Jennifer:  Our doctor has a unique way of addressing the patient. It makes you feel that in addition to your input as a parent, your child’s input is valuable. That’s very important.

I think one thing I’ve learned over 16 years of Rachel’s treatment is that thinking of Riley Hospital for Children as simply a place where children are sick is a very plain interpretation. There’s such a wide range of services offered for kids with large concerns, medium concerns, and small concerns. These services really benefit kids in small ways that can have big outcomes.

How important is it for the community to support Riley through donations? 

Jennifer: I think there are probably kids in everybody’s lives who have benefited from Riley and you may not know it. I feel like Riley touches so many kids throughout the state. In Rachel’s case, few people in our everyday lives would realize that Rachel has been here as many times as she has, but I would think that everybody knows somebody who has benefited from Riley in some way. And that’s important to support.

Rachel: I would agree with that. For my high school dance marathon at Lawrence North, I am the hospital relations director, and I never realized that other people at my school actually went to Riley too. So I guess it’s realizing how many people that Riley actually impacts.

Jennifer: As a parent, I think Rachel had a strong support system around her. That helps her success. The team of doctors and specialists she has been able to access through Riley Hospital really has her where she is today as a highly functional independent kid ready to look forward to the future and go to college. So I’m terribly grateful.

Please make a donation to BeTheHopeNOW to support Riley kids like Rachel. 

Riley Blogger

The Riley Blog is written and/or edited by members of the Riley Children's Foundation Communications Staff.

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