Before Riley Kruse had reached age 20, she had been operated on nearly two dozen times. The majority of those surgeries occurred as a toddler.
The baby had been born two months premature with a condition called hemifacial microsomia – meaning bone was missing from one side of her jaw, making it difficult to bite and move.
Doctors at St Louis Children’s Hospital also removed a golf-ball sized tumor from her skull and worked to strengthen her weak heart. They tried to lengthen her jaw, which was not developing properly.
Years later, Ms Kruse, now 19, met the physician that would change her life: Dr Kamlesh Patel, a pediatric plastic surgeon who created a custom titanium jaw for the teen.
Now, Ms Kruse has returned to the hospital where she spent months as a patient to shadow Dr Patel as a pre-medical student, with dreams of one day helping kids like her.
Ms Kruse was born two months premature and had to spend the first months of her life in the neonatal intensive care unit
Ms Kruse is now in college in St Louis, and studying to become a doctor. She was born with a common condition that affects symmetry in the face, as well as a brain tumor and a weak heart
Ms Kruse said: ‘I had to stop and ask myself, “Why me?” a few times. I had no confidence as a teenage girl who looked different. But I get, “Why me” now.
‘Without all these experiences I wouldn’t be me. I wouldn’t have these connections and have the opportunity to support patients in similar situations.’
Hemifacial microsomia occurs when one side of the face is underdeveloped.
It commonly affects the lower half of the face, impacting the cheek bones, jaw, facial muscles or ears – but can occur anywhere on the skull – including the eye.
The condition affects between one in 3,500 to one in 5,600 live births per year in the US. This makes it the second most common birth defect in the nation, behind cleft lip and palate.
Hemifacial microsomia can make talking, eating, breathing, seeing, moving facial muscles and even hearing difficult, but it generally does not impact life expectancy.
Some patients have full bones and muscles missing, while others deal with little to no side effects.
In the more severe cases, like with Ms Kruse, who had an entire chunk of bone missing from the right side of her face, one of the only options to restore shape and function may be surgery.
Operating on people with this condition can be difficult because each case is unique, so there isn’t one surgery that doctors can practice in order to specialize.
In addition, it requires a specialized doctor to operate on muscle, bone, cartilage, blood vessels and nerves, making for a complex surgery.
Doctors aren’t sure what causes hemifacial microsomia to develop. In Ms Kruse’s case, it could have to do with her premature birth and the other conditions she was dealing with in the early years of her life.
She was born two months early, and weighed only four pounds and spent months in the neonatal intensive unit.
Doctors operated on a brain tumor and her heart, which didn’t develop correctly, and was beating more than 200 times a minute, working itself to death.
Dr Patel specializes in craniofacial and reconstructive plastic surgery at St Louis Children’s hospital. The surgery he performed on Ms Kruse was the first of its kind at that location
Eventually, after more than 20 surgeries, her condition had stabilized. But the right side of her jaw hadn’t developed normally. Doctors performed surgical procedures to lengthen her right jaw, but Dr Patel’s transplant really made the difference.
When Dr Patel operated on Ms Kruse in 2019, it was the first surgery of its kind to be performed at St Louis Children’s. He designed a custom titanium implant for the then-17-year-old in hopes it would help her be able to bite, open her mouth and move her jaw more freely.
During a 14-hour operation, Dr Patel secured a new jaw onto Ms Kruse’s face. This surgery, and the six weeks of recovery, which included severe swelling, pain and avoiding foods and drinks colder than 70 degrees, takes grit, Dr Patel said.
‘You have to be physically strong to go through this procedure, but mentally strong as well,’ Dr Patel said.
He commended Ms Kruse’s strength, and she said she couldn’t have done it without his compassion.
‘He cared about me like I was his own kid. And so that really made a big difference in how this recovery and this whole process had been ‘ Ms Kruse said.
Since then, Ms Kruse returned to her senior year of high school, ran cross country and graduated on time.
She then started college in her hometown of St Louis, and decided she wanted to pursue a career in medicine. Part of that path includes shadowing the very doctor that gave her a new lease on life.
After her grueling surgery, Ms Kruse returned to finish her senior year of high school in St Louis. She ran on the cross country team and eventually earned a scholarship to a Missouri based college, where she’s now studying pre med
Now, on the other side of the doctors office, Riley helps counsel patients who come to Dr Patel with the same condition. One patient in particular stood out – Jack Lofton.
During his six month post-operative check up, Ms Kruse watched over Dr Patel’s shoulder as he checked Mr Lofton’s bite and asked him how he was feeling. During the surgery, Ms Kruse sat with the Lofton parents, assuring them their son was going to be okay.
Mr Lofton said having her there made the process easier.
‘Having Riley working at the hospital definitely helps a lot,’ Mr Lofton said, adding: ‘Just having someone my age, someone that knows what I’ve done and someone that puts it in words that I understand better, it definitely just helps me process information a little bit better.’
Likewise, Ms Kruse sees herself in the patients in Dr Patel’s office, and is able to approach them with a unique understanding.
Ms Kruse said: ‘The first time I met Jack it was like, “I’m not alone.”
‘It’s been such a blessing to be able to carry him through this procedure and through the recovery because it truly was a time when I was so alone and it really felt like no one understood me.’
This driving force – to make sure no one like her feels alone – is clear today. She looks forward to a long career in medicine.
She said: ‘I feel like everyone is born with a purpose and a reason, I truly feel like I don’t know who I would be without going through all of that. It shaped me into the person I am today and it’s led me into the future career I want to go into.’
