Child’s first solo steps much more than a milestone for Miller family

By James Grob, jgrob@charlescitypress.com

A child’s first steps are a milestone for any family.

That parental pride and joy was multiplied by “tens of millions” for Jenni and Drew Miller on Sunday.

“When you’re reading about having a kid with special needs, a lot of people will say you’re going to cherish the things you thought were little,” Drew said. “So when we hit this big milestone with Haddy, it was huge.”

To the Millers, the event was not only a big milestone, it was a small miracle.

“She’s walking, and we just didn’t know if she would ever walk,” Jenni said.

The Miller’s youngest daughter, Hadleigh — who often goes by “Haddy” — has spina bifida, a congenital defect of the spine in which part of the spinal cord and its meninges are exposed through a gap in the backbone. It often causes paralysis of the lower limbs, and sometimes mental handicap.

Spina bifida — which literally means “split spine” — happens when a baby is in the womb and the spinal column does not close all of the way. It is the most common permanently disabling birth defect in the United States.

In Haddy’s case, the defect was discovered via ultrasound before she was born. The Millers asked the doctors what their options were, and were told they would perform a surgery soon after birth.

Drew and Jenni had heard that there was a surgery that could be done in-utero, and the baby could have a much higher chance of a better quality of life. They soon discovered that the Mayo Clinic in Rochester does prenatal repairs of spina bifida. That’s where the Millers went.

“We were diagnosed in December, and we had only two weeks from the moment we were diagnosed before they operated,” said Jenni. “It was incredibly fast. It was incredibly emotional. We chose fetal surgery because the outcomes are better. Research shows that they’re more likely to walk, less likely to need a shunt.”

The surgery was very high risk, however. At the time there had been only six of these surgeries performed at Mayo, and in two of those the baby had died.

“It was especially scary, because there was such a high fatality rate,” Jenni said.

The surgery was successful, and Haddy was born, on schedule, three months later.

There were battles from day one. Haddy did need a shunt, and had to endure nine surgeries in the first three months of her life, on top of the surgery she had before she was born.

Now 3 years old, Haddy decided to walk this past Sunday — which was the anniversary of the marriage of Jenni’s parents. According to Drew, Jenni’s mother said it was the “best gift she’d ever gotten.”

“She’s been working on walking at therapy at the hospital twice a week for two months,” Jenni said.

Haddy’s 5½-year-old sister, Emersyn — who goes by “Emmy” — said she is proud of her little sister walking on her own. She said she’s also proud that she’ll be going in to kindergarten at Washington Elementary in the fall, while her sister will be going to preschool there. Her parents are proud of that, too.

“We’d like her to just be able to keep up with her peers,” Jenni said.  “We want her to be able to move around and have fun with her friends.”

Jenni shot video of the first solo walk, and — proving you can’t keep a proud grandpa from doing what he wants — Drew’s father took the video and posted it on social media. “This is the best thing on the internet today,” was his caption.

Drew’s father, it turns out, is friends with someone at KWWL television in Waterloo, who saw the video on Facebook and reposted it, with permission, on the station’s website.

The video shows Haddy proudly and independently navigating the sidewalk in front of the Miller’s Charles City home.

“I’m going to step on your toes!” she tells her father. “I don’t need help.”

Later in the video, she looks up at Jenni and says, “I’m almost there, Mommy!”

Haddy was an immediate internet video hit, and seemed to have the charm and composure of a Hollywood star, which seemed a little unusual to her parents, because she’s typically the less demonstrative of the Miller’s two children.

Emmy and Haddy are opposites, they said. Emmy is very outgoing and Haddy is very shy.

Emmy was just 2 when Haddy was born, and at the time, the thought of taking care of a child that young along with a disabled infant seemed overwhelming to Jenni.

“I was scared. I didn’t know how I was going to parent a child with a disability,” Jenni said. “And then I met her, and none of it mattered. She was here, she was amazing, she was her version of perfect.”

Jenni said that’s what she would tell other expectant mothers in similar situations.

“When you meet your baby, it’s all worth it,” she said. “Everything that you feared isn’t as big of a deal as you thought it was going to be.”

Of course, three years of medical care, missing work, and special equipment costs money, as does accommodating Haddy’s therapy schedule and trips to Rochester. The bills add up, and that continues perpetually.

“It’s definitely expensive,” Jenni said. “Luckily, we have her on Medicaid now, but it took a very long time to get her on that, so we still have a lot of bills from her birth, and all that followed.”

Those bills seemed like a minor inconvenience on Sunday, however, as the Millers watched Haddy take those steps, all by herself.

“This is what we were hoping for. She’s walking, she’s talking, she’s on track in every area of her development,” Jenni said. “Her teachers and therapists are all very pleased with how she’s doing, so this is what we hoped for when we went through the surgery three years ago.”