Limb-deficient children must feel comfortable and functional in their prosthesis if it is expected to be worn continually.
An uncomfortable prosthesis reduces function dramatically and can ultimately hurt the child by causing blisters or painful cuts on the skin. Although a comfortable and precise fitting is crucial, function along with parental perseverance, play major roles in a child’s rejection or acceptance of their prosthesis.
“We just rarely have a child reject a prosthesis and the reason we find that they do reject them is because they do not have a comfortable fit,” Kenneth Bean, vice president of operations and co-founder of Pediatric Prosthetics Inc., said.
Bean recalled an instance at his baseball clinic he runs every year. One of his attendees, a transtibial amputee who could not have been more than 11 years old in Bean’s estimation, hammered a line drive in a parent-child game that went over the outfielder’s head. The batter raced all the way around the bases for an inside-the-park homerun. When the batter slid into home, Bean described his face as laughing and crying at the same time. When asked why he was crying after just hitting a homerun, the batter said his leg hurt. He lifted up his pant leg and discovered a gash that went all the way around his calf. As he was running the bases, the ill-fitting prosthesis was slicing the skin of the 11-year-old from the top of the prosthesis.
“There is a way to pad the edge of that prosthesis to allow the leg to move around in there just to give the patient some protection,” Bean explained. “This particular prosthesis did not have that. This will not be a problem walking down to the mailbox. But trying to run the bases as fast as you can sure will.”
A child will not wear a painful prosthesis. They may also reject a prosthesis that is too heavy.
According to Bean, a properly designed upper extremity prosthesis weighs just about as much as a child’s own arm would weigh holding a cup of water – the cup of water symbolizing the weight differential.
“If [the patient] has the proper leverage with a good solid socket fitting, [the prosthesis] will work great and there is no sensation of weight,” Bean said.
Despite the improvements in myoelectric technology, a child may believe they can do more without the prosthesis and reject it no matter the comfort level.
Gregory Doerr, CPO, LP of Prosthetic and Orthotic Care Inc. in St. Louis, believes the choice comes down to what is more functional for the child. A child will wear a lower extremity prosthesis because it is vital for their functional walking. If the child has lost an upper extremity limb and they feel they can do more with the upper extremity prosthesis, they will wear it. If they believe they can do more without the device, there is a possibility of rejection.
It is difficult for a prosthetist to replace the lost function of a limb. The challenge becomes greater when the amputation is an upper extremity. More function is lost when an upper extremity limb is amputated than lower extremity.
It is important to note that most children do wear their prosthesis. The question of whether or not a child will wear their prosthesis comes into play in the upper extremity. More upper extremity prostheses are rejected than lower limb. According to Doerr, this is because typically children that reject a prosthesis are below the elbow amputees that find they can use their elbow joint to do most activities.
“Upper extremity is different than lower,” Doerr said. “With upper extremity, it’s got to be a perfect fit in order for it to be functional.”
In order to maximize function, Bean recommends a child amputee be fitted for a prosthesis as soon as possible.
According to Bean, the earlier a limb-deficient child is fit for a prosthesis, the greater chance he or she has of continually wearing the device during childhood regardless if the child is a congenital or an acquired amputee. While this argument has been debated, Doerr agrees an early fitting will increase the child’s ability to adapt to their prosthesis over the years.
In his four-part inMotion series, Congenital Limb Deficiencies and Acquired Amputations in Childhood, Douglas G. Smith, MD stated that children who require an upper extremity prosthesis are considered ready for fitting when they are able to sit and begin to develop two-handed skills. This normally takes place within 3 to 7 months. The first prosthesis is passive but it can help a baby crawl and push to sitting and standing positions. A new prosthesis is needed when children begin to perform intricate activities around the age of 1.
“The earlier, the better,” Bean explained to O&P Business News. “If the child [required an amputation] when they were 4 or 5 or older due to trauma, they are thrilled to get a prosthesis because they are thrilled to have that function back.”
Doerr always asks his patients if there are any activities they cannot do now with their prosthesis that they would like to do.
“It is not very often they say yes, children usually find a way to do just about anything,” Doerr said.
He currently works with Liana, a 7-year-old congenital amputee. He has been fitting her with a lower extremity prosthesis since she was 1 year old.
“She does gymnastics and she competes against able-bodied gymnasts,” he explained. “She’s winning first place right now in all of her activities. You can make it work.”
Doerr recommends an early fitting in order for the patient to quickly incorporate their prosthesis into their body image. As the children move into their pubescent years, cosmesis becomes a priority.
Children can now have their favorite superhero or favorite team’s logo painted on their prosthesis. According to Doerr, the kids love it and the custom designs have made it easier for the child and their friends to accept their prosthesis.
“As soon as a patient gets one leg [fitted and designed], they tell me they want the next leg to be Superman,” Doerr said. “They are always thinking about what they want next. They’re proud of it and they’re showing it off to their friends. It makes a big difference.”
The custom designs and the development of more cosmetically pleasing technology will help ease the transition into a more social atmosphere for those patients who were otherwise hesitant to join a team or a club.
Young amputees, acquired or congenital, with a well-fitting prosthesis can be just as active as their friends. Bean has coached amputees on baseball, basketball, football, tennis and volleyball teams.
“We have a 15 year-old-girl who is a ballerina in the Nashville Ballet Company,” Bean said. “She wears a below-elbow myoelectric prosthesis. She wears her myoelectric depending on the role she’s in and what she needs to do on stage.”
In one act she wore her myoelectric prosthesis when her character needed to carry props. In the next act, she slipped off her myoelectric prosthesis and put on her cosmetic limb.
“This isn’t a high school ballet or a college ballet; this is the City of Nashville Ballet Company. Music City, USA,” Bean exclaimed.
Trial and error
In order for a child to feel comfortable and functional in their prosthesis, they must go through a proper fitting. These fittings, while useful, can be time-consuming and the first fit may not be the best.
“Fitting the little [kids] is an art and it takes a lot of trial and error,” Bean said.
According to the Amputee Coalition of America, congenital amputees account for 26 of every 100,000 live births with 58.5% of those being upper extremity limb loss. Due to the small overall number, pediatricians and prosthetists do not regularly see and treat young limb-deficient children.
“Most pediatricians have never run into a child missing an arm or a leg in their whole career,” Bean said. “It’s just rare.”
Due to the low numbers, prosthetists do not have the opportunities to experiment and practice fitting a newborn or small child. As in any occupation, the more times you practice, the better you become. The less practice, the more bumps in the road.
The constant struggle to get the right fit may leave not only the child frustrated but parents as well.
“You get the kids coming in here for adjustments all the time,” Doerr said. “Kids come back about every 3 months for adjustments and depending how old they were for their amputation, they may get a new leg every year. We put as much adjustability on there as possible but sometimes it just depends on how fast they’re growing.”
A precise fitting may require several visits to account for adjustments and training. As the child grows, changes to the residual limb will occur. This will require changes in sockets, additional liners and eventually a new device. As the child’s activity level increases, more function will be necessary requiring more visits and fittings. Bean has witnessed parents who simply become burnt out by the frequent visits and time consuming nature of a prosthesis fitting.
According to Smith, children can easily pick up on their parents’ attitudes. Parents set the tone, occasionally for the worse.
“Sometimes [the parents] get discouraged and sort of just run out of gas,” Bean said. “I don’t blame them but it does make us sad when they just sort of run out of gas. It certainly takes committed parents.”
Doerr educates parents about the importance of keeping a close eye on their child’s skin when they take off their prosthesis.
“The parents’ job is to make sure their child’s skin is clean and healthy when they take off their leg,” Doerr said. “It falls on the parents because, a lot of times, the child isn’t going to say anything. Usually, when we fit a leg, the family is there and we go through the whole process together.”
To avoid burn-out and discouragement, families have set up national chat rooms for parents of children with missing limbs. Parents can go in the chat room and discuss their child, brag about their successes, discuss ways to handle certain situations and most importantly, encourage each other.
“The only thing we look for is committed parents,” Bean explained. “It’s crucial.”
Parents who establish routines with their child will find that they have an easier and less frustrating experience.
“What we found is that parents who get their child’s routine started, from getting up in the morning, taking a shower and then just popping on their leg, then they will wear it until bedtime,” Bean said.
Situations arise and routines occasionally break. While children can adapt rather quickly to routines, Bean understands that children can adapt out of them just as quickly. This is where strong parenting and perseverance play an important role.
“Sometimes the child complains or whines and the mom or dad doesn’t put the prosthesis on the child,” Bean said. “But sometimes you just have to be strict and force the routine.”
If a parent can institute a routine that involves wearing a prosthesis, the child will slowly adjust and ultimately benefit.
For more information:
- Smith, Douglas G. Congenital limb deficiencies and acquired amputations in childhood, part 2: emotional response and early management. inMotion 2006; 16(2): 52-56.
- Smith, Douglas G, Campbell, Kellye M. Prostheses for children and teens with limb differences: issues and expectations. Expectations 2005; 1(1):1-5.
- National Limb Loss Information Center. 2008 amputation statistics by cause limb loss in the united states. Available at www.amputee-coalition.org. Accessed Mar. 30, 2009.
Anthony Calabro is a staff reporter for O&P Business News.