It has solely been one month since 16-year-old Malena had hip substitute surgical procedure, however the operation has been a game-changer.
Previous to the surgical procedure, Malena was bed-bound, struggling ache and issues together with her joints like many teen and grownup sufferers with spinal muscular atrophy (SMA). The uncommon genetic illness impacts nerve cells and causes muscular tissues to change into weak.
When Malena developed arthritis between the ball and socket joint of her hip, she sought ache reduction, in addition to a rise in perform and motion, via a whole hip substitute.
“Her left hip was so painful that it was troublesome for Malena to switch from her wheelchair, take part in common actions or stay in an upright place for a number of hours a day,” mentioned Nina Daya, Malena’s mom. “We have been on the lookout for the perfect resolution, and Dr. Pereira made that occur for us.”
Internationally famend pediatric orthopaedic surgeon Jon Davids had referred Malena from Shriners Kids’s Northern California to seek the advice of with UC Davis orthopaedic surgeon Gavin Pereira. Pereira makes a speciality of advanced hip and knee replacements and revisions of failed joint replacements inside the UC Davis Division of Orthopaedic Surgical procedure.
Pereira had intensive discussions with Davids in regards to the surgical choices accessible to Malena. Davids was nicely versed in operations on the hip. He felt {that a} hip substitute could be an excellent possibility if it was technically attainable.
Pereira met with Malena for an analysis and heard her need for a hip substitute.
“After spending time speaking to Dr. Pereira, Malena felt like he understood her imaginative and prescient for herself and thought he was an ideal supplier to make this a actuality,” Daya mentioned. “The connection between Malena and Dr. Pereira is particular and constructed on belief.”
No reported instances in medical literature
Pereira had by no means seen a affected person like Malena earlier than. After evaluating her, he regarded within the medical literature.
“I discovered no case studies on hip replacements carried out on a affected person with SMA. If it has been accomplished, it’s not been reported,” Pereira mentioned. “Most surgeons would say {that a} hip substitute just isn’t indicated in a affected person who just isn’t in a position to stroll, and they’d be proper.”
Whereas many sufferers with SMA are usually not viable candidates for hip substitute surgical procedure for a lot of causes, together with softness of their bones, Malena had been handled quarterly with Spinraza (Nusinersen), the primary FDA-approved drug to deal with SMA, which may strengthen sufferers’ bone mineral density.
Pereira was up for the problem. He noticed two choices that would assist Malena:
- He might take away the ball of the thigh bone or femur and go away Malena with out a hip joint, referred to as a Girdlestone operation. However with out the ball of the thigh bone, he apprehensive that she would nonetheless expertise the feeling of bones rubbing in opposition to one another or the vary of movement of the hip would cut back considerably. It additionally didn’t assure that she wouldn’t have continual ache.
- He might give her a hip substitute, however he was involved this was a extra intensive operation than required and would expose her to extra issues. She additionally had a really small body, and he didn’t know if the smallest implant available on the market would match her.
He wouldn’t know what path he would want to decide on till he was within the working room. However Pereira started surgical planning with navy precision. He labored via all the particulars of the surgical procedure together with his staff, utilizing three-dimensional printed fashions of CT scans of her pelvis.
He additionally ensured that her staff of specialists would have the ability to take care of Malena after her surgical procedure to make sure that she was steady. The staff of specialists included:
They have been all a part of a single e mail chain, so everybody was conscious of the devoted position they might play in help of her care. As well as, nurses Julia Pasterski, Cindy Anderson and Melissa Wulff, together with working room nurse Inna Murzin and principal surgical technician Jeff Rogers, have been closely concerned within the planning.
“Every thing was finely tuned. Everybody knew their position. We had deliberate for each attainable end result in surgical procedure,” Pereira mentioned.
This surgical procedure is life-changing as it’s going to open many doorways for Malena’s total well-being and confidence via elevated mobility.” —Nina Daya
A brand new lease on life
Pereira carried out a hip substitute surgical procedure for Malena final month with out issues. Her bones have been stable, and the substitute left hip match her body.
He noticed Malena after surgical procedure that night on his rounds within the Pediatric Intensive Care Unit.
“She was sitting up in mattress like nothing had occurred to her. She was snug. It was exceptional,” Pereira mentioned.
Daya mentioned she is proud that Malena is the primary SMA affected person to have had hip substitute surgical procedure. It has taken away Malena’s ache and given her a brighter future.
“This surgical procedure is life-changing as it’s going to open many doorways for Malena’s total well-being and confidence via elevated mobility,” Daya mentioned. “I can see alternatives with adaptive sports activities and attainable robotic choices to help her sooner or later. Life is thrilling! We’re blessed that we now have UC Davis.”
