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The ‘new normal’

Raising two special needs children and choosing adoption, the Ashe family redefines happiness

Posted: August 10, 2014 2:00 a.m.
Updated: August 10, 2014 2:00 a.m.

Angie Ashe holds her 2-year-old daughter Fiona in their home in Valencia. Austin Dave/The Signal

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Bouncing up and down and chattering, 2-year-old Fiona wielded her popsicle like a staff and climbed atop her mother’s lap until she felt tall enough to command the attention of the room.

Once settled, she sang, crooning nonsensically to her sister laying on the rug.

Noticing her sister’s glasses had fallen askew, Fiona zoomed to the rescue, knowing 4-year-old Elliot can’t adjust the frames herself. Well-meaning but not yet gentle, as most 2-year-olds, Fiona picked up the glasses only to be swooped up by her mother, who then hugged her daughters and helped Elliot stand.

To the Ashe family, almost nothing is as they expected; they’ve adjusted to a “new normal,” meeting each chaotic moment with a laugh and hug.

Fiona and Elliot have different genetic conditions that inhibit their mobility.

While Rob and Angie Ashe were surprised when Elliot was born with a rare muscle and joint condition, they were ready the second time around.

When the couple adopted Fiona, they intended to help another child who could benefit from Elliot’s excellent team of doctors.

“They were born with these conditions,” Angie said in their Valencia home Tuesday. “But how they were on the day they were born is the worst they’ll ever be.”

Elliot and Fiona’s conditions will not progress. Surgeries and therapies can correct their malformed limbs, improve function and advance quality of life.

“Now the focus is on repair,” Angie said.

Elliot

The first thing the Ashes remember hearing when doctors delivered Elliot was: “Something’s wrong here.”

Elliot was born with arthrogryposis multiplex congenita, a condition that caused the muscles around her joints to be thin, weak, stiff or missing.

In utero, Elliot’s arms stuck out straight and her legs were bent “criss cross apple sauce,” Angie said. Extra tissue then formed around her joints, locking them into place during the first trimester.

The exact cause of arthrogryposis is unknown, but different hospitals or medical organizations suggest insufficient movement in the womb, abnormal development of muscles or malformation of the central nervous system.

After receiving Elliot’s diagnosis, Angie called their pediatrician to warn her that their next appointment wouldn’t go as planned.

“She already had referrals set up for specialists at Children’s Hospital Los Angeles,” Angie said. “With the exception of one doctor, we’ve stayed with the whole team she put together.”

Elliot works with specialists in lower orthopedics, upper orthopedics, cardiology, neurology and urology, as well as behavioral and physical therapy specialists.

“When you have a good team, you actually enjoy going to visit them,” Angie said.

Elliot’s journey to improve function began with movement therapies in the NICU and has included stretches, casting sessions, braces and four surgeries, Angie said, describing the treatments. Her first two surgeries enabled her to walk.

“Her feet were pointed like a ballet dancer on point,” Angie said of Elliot’s muscle positioning at birth, “and she didn’t have the muscle to pull them forward.”

But the Ashes knew Elliot wanted to walk because she was up and moving in her walker all the time. To correct her feet, doctors broke each femur and repositioned the legs, Angie said.

“At 2 years and 11 months, she took her first independent steps. We were playing in the Disney store,” Angie said.

Next, doctors focused on arm function, so Elliot could bend her elbows and acquire her next life skill: feeding herself.

“I was so excited to take her in (to the doctor’s office),” she said, “and show everyone what she could do.”

Fiona

When Rob and Angie married, they knew they would adopt, but they’d always planned on bringing a local foster child into their family.

After seeing the progress Elliot made with her team of doctors and the happiness their family achieved, the Ashes changed plans: They would adopt a child with an orthopedic disability.

“Elliot changed the vision in our heads about the child we wanted to adopt,” Angie said.

When adopting, parents can check lists of medical needs or disabilities if they feel they are equipped to handle special challenges.

While a child with malformed limbs may scare another family, the Ashes considered that normal; however, the Ashes are less prepared to raise a child with brain damage, though that may be another family’s normal life, Angie said.

“You have to find what doesn’t scare you,” Angie said.

After some research, the Ashes learned foster children can have access to CHLA.

“So we looked for a child with orthopedic disabilities who wasn’t getting any care,” Angie said.

Fiona has amniotic band syndrome. In utero, her hands and right foot became entangled in amniotic bands that restricted blood flow and affected development; the bands wrapped around her like rubber bands, squeezing her tight, Angie said.

“She has three whole fingers; everything else is a partial finger,” Angie said. “People don’t even notice because she can do so much with her hands.”

When the Ashes met baby Fiona, they were prepared for an immobile child with severely deformed hands and only one fully formed foot.

“We went to China expecting to bring home a fragile, broken child,” Angie said. “For the first few days, she was petrified, and we thought we got exactly what we expected.”

Back in the hotel room, during their first night with Fiona, Rob held up a cookie, offering it to Fiona.

“She ran across the room,” Angie said. “We laughed our heads off. We did not believe she could walk!”

Like Elliot, Fiona’s journey includes casts, therapies and surgery, which will eventually enable her to wear a prosthetic foot.

Her first surgery loosened the bands, and her next surgery will allow her to be fitted for a prosthetic, they said.

“Apparently, she had been turned down by so many families, according to our agencies, because of her physical differences,” Angie said. “But to us, we don’t even notice.”

Next steps

Elliot and Fiona recently came out of back-to-back, corrective surgeries with the Ashes’ specialized medical team.

Each girl’s surgery brought her one step closer to independence and improved function.

Through friends and support groups, the Ashes have learned that others with Elliot’s condition have gone off to college and now live independently.

And Fiona shows no signs of slowing down. Climbing up the couch, singing and bouncing, Fiona put on a show without any awareness of a disability.

“It’s a lot of fun,” Angie said. “Elliot is completely happy to be at CHLA, and she gets excited when we pull into the therapy center.”

Angie says their team of doctors and therapists are now more like friends.

“They understand our world,” Rob said.

Surrounded by toys and specially designed play centers, the Ashes seemed in a rhythm.

“For parents who are given a surprise diagnosis when your child is first born, it will become your new normal,” Angie said. “In the beginning, we cried a lot. You have to mourn the child you thought you were going to have to accept the child you actually have in front of you.”

Angie played softball for 10 years and always imagined coaching her daughter.

“But you get to a point where you think, ‘Why does that matter?’” Angie said. “She’ll do other things.”

As Rob held Elliot, Fiona climbed onto Angie’s lap. Making one of her characteristic goofy faces, Fiona launched the family into laughter.

“My kids are adorable,” Rob said with a smile. “What more do you need than that?”

 

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