Before Riley Kruse turned 20, she had undergone surgery nearly two dozen times. Most of those surgeries occurred when he was a child.
The baby had been born two months early with a condition called hemifacial microsomia, meaning she was missing bone on 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 his skull and worked to strengthen his weak heart. They tried to lengthen his jaw, which was not developing properly.
Years later, Kruse, now 19, met the doctor who would change her life: Dr. Kamlesh Patel, a pediatric plastic surgeon who created a custom titanium jawbone for the teenager.
Now, Kruse has returned to the hospital where she spent months as a patient to shadow Dr. Patel as a medical student, with dreams of one day helping kids like her.
Mrs. Kruse was born two months premature and had to spend the first months of her life in the neonatal intensive care unit.
Mrs. Kruse is now at St. Louis University studying to be a doctor. He was born with a common condition that affects facial symmetry, as well as a brain tumor and a weak heart.
Mrs Kruse said: “I had to stop and ask myself, ‘Why me?’ a couple of times. I didn’t have confidence as a teenager who looked different. But now I understand, ‘Why me?'”
‘Without all these experiences I wouldn’t be me. I wouldn’t have these connections or the opportunity to help 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 cheekbones, jaw, facial muscles or ears, but can occur anywhere on the skull, including the eye.
The condition affects between one in 3,500 and one in 5,600 live births per year in the United States. This makes it the second most common birth defect in the country, behind cleft lip and palate.
Hemifacial microsomia can make it difficult to speak, eat, breathe, see, move facial muscles, and even hear, but it usually does not affect life expectancy.
Some patients are missing complete bones and muscles, while others suffer few or no side effects.
In more severe cases, like Kruse’s, who was missing an entire piece of bone on the right side of his face, one of the only options to restore form and function may be surgery.
Operating on people with this condition can be difficult because each case is unique, so there is no surgery that doctors can perform to specialize.
In addition, it requires a specialized doctor to operate on muscles, bones, cartilage, blood vessels and nerves, being a complex surgery.
Doctors are not sure what causes hemifacial microsomia to develop. In Mrs. Kruse’s case, it could have to do with her premature birth and the other conditions she faced in the early years of her life.
He was born two months early, weighed just four pounds and spent months in the neonatal intensive unit.
Doctors operated on her for a brain tumor and her heart, which was not developing properly and was beating more than 200 times a minute, until she died.
Dr. Patel specializes in craniofacial plastic and reconstructive surgery at St Louis Children’s Hospital. The surgery he performed on Mrs. Kruse was the first of its kind there.
Finally, after more than 20 surgeries, his condition stabilized. But the right side of his jaw had not developed normally. Doctors performed surgical procedures to lengthen his right jaw, but Dr. Patel’s transplant really made a difference.
When Dr. Patel operated on Ms. Kruse in 2019, it was the first surgery of its kind performed at St Louis Children’s. He designed a custom titanium implant for the 17-year-old in the hopes that it would help her bite, open her mouth and move her jaw more freely.
During a 14-hour operation, Dr Patel placed a new jaw on Ms Kruse’s face. This surgery, and the six weeks of recovery, which included severe swelling, pain and avoiding foods and drinks below 70 degrees, takes determination, Dr. Patel said.
“You have to be physically strong to go through this procedure, but also mentally strong,” Dr. Patel said.
He praised Mrs. Kruse’s strength and she said she couldn’t have done it without his compassion.
‘He cared about me as if I were his own son. And that really made a big difference in how this recovery and this whole process had been,’ Ms Kruse said.
Since then, Kruse returned for his senior year of high school, ran cross country and graduated on time.
He then started college in his hometown of St Louis and decided he wanted to pursue a career in medicine. Part of that path includes following the same doctor who gave him 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 university, where she now studies pre-med.
Now, on the other side of the doctor’s 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 felt. During the surgery, Mrs. Kruse sat with Lofton’s parents and assured them that their son would be fine.
Lofton said having her there made the process easier.
“Having Riley working at the hospital definitely helps a lot,” Lofton said, adding, “Having someone my age, someone who knows what I’ve done and someone who puts it in words I understand better, definitely helps.” I process information a little better.’
Likewise, Ms. Kruse sees herself in the patients at Dr. Patel’s office and is able to approach them with a unique understanding.
Mrs Kruse said: “When I first met Jack I thought, ‘I’m not alone.’
“It has been a great blessing to be able to accompany him during this procedure and during recovery because it really was a time where I was very alone and I really felt like no one understood me.”
This motivation, that no one like her should feel alone, is clear today. He hopes for a long career in medicine.
She said: “I feel like everyone is born with a purpose and a reason, I really feel like I don’t know who I would be without going through all that.” “It transformed me into the person I am today and has guided me towards the future career I want to pursue.”