One Family’s Message to Others, ‘Everyone is Unique’

Malia Juarez and her husband were over the moon with excitement when they found out they were pregnant. Their journey to get there hadn’t been an easy one. Juarez suffered from endometriosis, and so heartbreaking words like infertility had been discussed.

They dreamed of the pitter patter of little feet running through their home, and of holding small hands as they embarked on adventures.

They dreamed of that future, until one day, their dream came true.

“She’s a miracle,” said Juarez.

An unexpected ultrasound

It wasn’t until their 20-week ultrasound when their joy turned to fear. As the ultrasound technician scanned their baby’s anatomy, she made an unexpected discovery – an extra digit. She counted 11 tiny toes. The extra toe was something their OB-GYN told them she had never seen before.

“We were terrified,” said Juarez. “It took the joy away a little bit.”

Polydactyly occurs in about one in 1,000 babies. Usually, babies with polydactyly are born with an extra digit on a hand or foot. Occasionally, children born with extra digits can also have other genetic conditions or syndromes. Because of that, they were sent to a specialist and geneticist.

“We were told to wait it out,” said Juarez. “We wouldn’t know anything for sure until she was born. I kept asking myself, ‘What if?’”

Patiently and optimistically, they awaited the arrival of their baby girl. Juarez affectionately named the extra digit on her baby’s foot.

“I called her my little twinkle toe,” said Juarez.

My little twinkle toe

Charlie Skye was born on Sept. 5, 2017. She was born with an extra digit on her left foot and an extra tag, or pinky, on her left hand.

“When she came out I remember asking, ‘Is her sixth toe there?’” said Juarez. “We fell in love with it. It wasn’t scary anymore. It was special.”

Aside from Charlie’s extra digits, she had no other genetic conditions.

“Not every child is born in the mold that we have in our minds of what is perfect,” said Juarez. “But she was perfect to us.”

Finding a medical home

Juarez holds her daughter after surgery at Seattle Children’s.

Charlie was referred to Seattle Children’s from her pediatrician. They met with Dr. Suzanne Steinman, an orthopedic surgeon and member of the Hand and Upper Extremity Program at Seattle Children’s. Together, they made a plan. Doctors, surgeons and occupational therapists at Seattle Children’s are experienced in a range of treatment options for polydactyly. Every patient’s treatment plan is tailored to meet their specific needs.

The extra digit on Charlie’s foot shared a joint with her pinky toe. As she grew, her foot would grow wider. She would have problems wearing shoes and would experience pain, and so the plan was to remove the extra digit on her foot, as well as the rudimentary finger on her hand.

On Feb. 1, 2018, Charlie had the small finger removed from her hand. According to Steinman, the procedure is very similar to clamping a belly button after a baby is born. The tag simply dries up and falls off. It’s a small outpatient procedure done in the clinic.

Nearly 8 months later, in October 2018, Charlie had surgery at Seattle Children’s Bellevue Clinic and Surgery Center to remove the extra digit on her foot and make sure the tag that was removed from her hand didn’t have any scar tissue. At the same time, she also had tubes placed in her ears to alleviate frequent ear infections.

“We were able to coordinate both surgeries in one to save the family time and travel since they lived so far away,” said Steinman.

The surgery was a success. Charlie had to wear a cast on her arm and leg for a couple weeks after the surgery, but once they were removed, she was active again.

“Dr. Steinman treated our daughter like she was her own,” said Juarez. “She was just wonderful. She not only took care of Charlie, she took care of us.”

For Charlie’s first birthday, her family got professional photos taken. Juarez wanted to document and celebrate Charlie’s sixth toe. The night before the surgery, they even made a mold of her foot so they could always remember her twinkle toe.

“The day of the surgery, I remember sitting with her before they took her back and asking the doctor for an extra few seconds,” said Juarez. “We just sat there and I sang her a song and held her. I didn’t want to let her go. Part of our daughter was going to be removed. I went through a grieving period. We’d fallen in love with that unique feature of hers.”

Building a community

Today, 16-month-old Charlie isn’t missing a step. Her future is bright and the sky is the limit. She enjoys exploring the outdoors with her adventurous parents and loves animals.

“She’s a normal little girl,” said Steinman. “She’ll be able to get manicures and pedicures, play soccer, or go on adventures with her parents. Her foot shouldn’t cause her any problems.”

For Juarez, she hopes their family’s story can offer hope to others. She said when Charlie was first diagnosed they felt alone. They didn’t know anyone else with polydactyly, and had never heard of the condition.

Charlie loves playing outdoors with her family.

“Becoming a parent is terrifying as is,” said Juarez. “Then throw in something that society would deem as abnormal. You feel shame. You feel like your baby isn’t perfect. That’s not how it should be. I don’t want any other moms to feel that way.”

Steinman says a diagnosis like polydactyly can be frightening, especially if parents turn to Google for answers.

“What you find on the internet can be terrifying,” said Steinman. “That’s why the first appointment I have with parents is one of the best. I can help alleviate their fears at that first visit. It’s just a fun finger. It’s nothing big or scary.”

Juarez has been very open about their journey, connecting with other families and encouraging others to share stories of their own. They are even involved in research at Seattle Children’s in hopes of one day being able to help learn more about the genetic mutation.

In the meantime, Juarez and her family continue to share the positive message that everyone is unique and beautiful because of their differences. They are also thinking about their future, one that includes the pitter patter of more tiny feet. Doctors told them they have a 50% chance of having another child with polydactyly. It’s not something they are concerned about. Juarez warmly joked, “I’ll have to think of another name for their sixth toe.”