In the early spring of 1998, Kathy and George Miller were forced to make
decisions that would forever impact their growing family. Kathy, soon-to-be
mother of twin boys, should have been readying the nursery for her double dose
of motherhood. Instead, she and her husband George learned that their children
developed twin-to-twin transfusion syndrome (TTTS) and that their
children’s lives were in jeopardy.
According to the Twin-to-Twin Transfusion Syndrome Foundation, the
condition occurs only within same sex, identical twins who share a common
single placenta. This condition could lead to a variety of physical
complications including an imbalanced disbursement of blood and can be fatal.
Early delivery
The Millers, quietly holding onto hope, decided to deliver their sons,
Alex and Nicky, 15 weeks before their due date. Despite doctors’ negative
expectations, both were born healthy, but each with his share of uphill
battles.
For Nicky, it was a battle with anemia, physical challenges and sight
problems that, to this day, do not deter his desire to follow in his
father’s footsteps and read as many books as he can consume.
For his brother, Alex, it seemed as though he was a healthy baby boy
with no apparent complications as a result of the TTTS or early delivery.
“He was the perfect little boy except he was 15 weeks early,”
Kathy told O&P Business News.
In the hours following the delivery, however, that changed drastically
and all without the guidance of mother Kathy, whose own ailments caused her to
lapse into a coma shortly after the delivery of her twins.
Decisions
Following birth, physicians inserted a catheter into Alex’s
umbilical line to deliver fluids and medicine. He developed a clot around the
line and shortly thereafter began to show signs of vascular complications
within his right leg.
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| Alex Miller does not let his amputation slow him down or stop him from enjoying his favorite sports. |
| Images: George and Kathy Miller |
Physicians gave George three options for treatment: remove the line and
see if the condition of Alex’s leg improved; keep the line intact and risk
further complications; or administer the anticoagulant heparin, the results of
which had never been studied on newborns.
“There were a lot of unknowns,” George said. “It was a
very tough time.”
George made the decision alone to remove the line from his son Alex
– a move that was unfortunately made too late.
“In a matter of 2 or 3 days, his leg lost all color,” Kathy
explained. “The line of demarcation was at his hip. I don’t think
that anybody really expected him to make it through that ordeal, even without a
compromised limb.”
Physicians waited to see if his leg would improve, but after 3 days, the
complications in Alex’s leg were too far gone to reverse. The decision was
made to airlift Alex to another hospital where he would undergo the amputation
of his right leg just below the hip.
Before he took the trip, which doctors thought for sure he would not
survive, Kathy woke up and saw her son Alex for what she thought might be the
last time.
“They didn’t expect him to survive the amputation. They
didn’t expect him to survive anything,” Kathy said explaining that at
the time of amputation, Alex’s leg was about the size of a pinky finger.
“Not Alex. He came back about a month later to the hospital where his
brother was and they both stayed another 2 months.”
Milestones
For the first year of his life, Alex figured out how to keep up with his
parents and brother. When he crawled, he scooted, Kathy explained. Before the
age of 1 year he even managed to climb out of his crib in the middle of the
night.
On his first birthday, just before the summer of 1999, Alex received his
first prosthesis from Shriners Hospital. They taught him how to fall and how to
pull himself up before turning over the new device.
“At 1 year old that’s a hard thing to do, but he learned how
to fall and he learned how to fall gracefully,” Kathy said.
The Millers were told he would always require a walker or a cane because
his amputation was at such a high level. Through work with a local physical
therapist who was also working with his brother Nicky, Alex learned to use a
walker along with his prosthetic device.
“One day I came home and [the therapist] she was there with him and
said, ‘Come here, I want to show you something,’” Kathy said.
“He was probably just shy of 2 years old and he had this big smile on his
face and he took his first step without his walker. I just broke out in tears.
He was so proud of himself.”
Like everyone else
Through the early years, Alex went through several different legs,
trying on new designs and the Millers began to get involved in different
amputee organizations like the
Amputee Coalition of America (ACA).
At their first event, Alex – age 5 years – noticed that many
of the other children wore prostheses with exposed metal. His prostheses had a
cover and foam exterior that hid the metal beneath. He questioned his parents
about the difference and they explained that he, too, had metal beneath the
surface. He was just like the other kids.
“He went into his room with the scissors and cut the foam part off
of his leg,” Kathy said. “He said, ‘I want to see my
metal’. From then on he didn’t wear a cover over it. It was one of
those first things that I thought to myself, ‘he’s going to be
okay.’”
Alex and his family continued to become involved with additional
advocacy groups such as the
Challenged Athletes Foundation (CAF) and the
Extremity Games.
“Life finds a way to figure things out. You may not have all the
parts to do it but you’ll figure out a way to do it,” George said.
“That’s what’s good about going to these different events and
meeting different people. It’s definitely helped Alex in understanding and
realizing that he’s not alone out there.”
The right fit
Kathy credits Alex’s prosthetist Dan Strzempka, CPO from Hanger
Prosthetics & Orthotics, with enabling Alex to get up and be active.
“Dan was a very integral part of him going from one of the buckets
that you just sit in like a hip disarticulation [patient] to a socket
fit,” Kathy said. “That’s one of the things we love about Dan.
He’s never afraid to try.”
Strzempka, also an amputee as a result of a lawnmower accident at age 4
years, understood what might work best for Alex clinically but was also able to
relate to him on a more personal level.
“When we were evaluating him, we realized he had a tiny femur. He
had some pretty good motion in there,” Strzempka said. “He was
successful with the previous device, it’s just that he wasn’t living
up to his potential so we thought outside the box and fit him as a very short
above-knee. It ended up working out really well.”
Alex could agree verbally that this new system worked best but instead
he proved it on baseball fields, basketball courts, soccer fields, swimming
pools, skateboarding courses and most recently the Pacific Ocean where he
completed the 1.2 mile ocean swim portion of the CAF San Diego Triathlon
Challenge in October 2010.
“I started training in mid-July and I had an injury so I
couldn’t be in the water for about a month so I trained for about 4
months,” Alex said adding that the cold water was the hardest part of his
37-minute swim.
Even Strzempka recognizes Alex’s involvement with the CAF as a
major turning point in his rehabilitation.
“He always wore the prosthesis but you kind of had to make him wear
it. When he went for the first time to CAF, he saw other kids who were really
active,” Strzempka said. “When he came back, he couldn’t wait.
We made him a running leg. That was a huge turning point in the rehab.”
Relationship
Working with and building a relationship with Alex has come naturally to
Strzempka, who recalls his own experiences as a boy working with his
prosthetist.
“I had a prosthetist who every time … he gave me the leg back,
he always had a pack of gum in there,” he said. “With Alex, I try to
have fun with him first and the leg is a secondary thing. With kids, you have
to build their trust and show them that you’re not there to do something
to them. You’re there to work with them.”
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| Dan Strzempka uses his own experiences to build relationships with his young patients. |
Despite the challenges that came along with Alex’s case,
they’ve grown to be friends who enjoy working together.
“My favorite thing about working with Dan is that he’s funny
and he gets what I want,” Alex said.
Strzempka’s relationship with the Millers goes beyond just his work
with Alex.
“The only person who can truly relate to that experience is someone
who’s gone through it,” George said. “Dan brings a tremendous
amount of insight to Alex’s situation. It’s a really nice
relationship because he gets it more than I could get it.” — by
Jennifer Hoydicz
