October is Spina Bifida Awareness Month and October 25 is World Spina Bifida and Hydrocephalus Day. To recognize the day and the month, we're sharing the story of Chloe and Gracie, two longtime Gillette patients connected by spina bifida, but much more than that, their profound friendship.
This story was originally posted in 2018 and the photos reflect that.
Read their story below:
Take a moment and picture your best friend. They may come into our lives at different times, but most people have one that stands out from the rest.
Some find theirs in childhood. Others, in a spouse, roommate or random acquaintance. How we meet them doesn’t really matter. What matters is finding that one person who truly understands you. That person you can be honest with and who will share in your personal successes, joy, pain and anything and everything that goes on in-between.
It’s amazing how much meeting one individual can change your life and the lives of everyone around you. This is the story of Chloe Engstrum and Gracie Hadlich.
Two Families, One Condition
Chloe and Gracie were born five days apart in September of 2000.
“We had a perfectly normal pregnancy,” says Ann Engstrum, Chloe’s mother. “After I gave birth I just heard the whole room go quiet. I knew something was wrong. They had to take her out of the room and it wasn’t until later that they told us that Chloe had spina bifida. We had no idea what that meant.”
Spina bifida is a disability that is present at birth that affects the spine. It occurs during the first trimester of pregnancy, when the structure that eventually becomes a baby’s spinal cord doesn’t develop properly.
“When you get the news, you’re obviously devastated and overwhelmed,” Ann says. “But when you see your child, all you see is your beautiful baby, and that’s exactly what Chloe was. She was perfect.”
The Hadlich family received more warning, as Gracie’s spina bifida was detected during an ultrasound, but they’ll tell you that knowing ahead of time doesn’t necessarily soften the blow.
“As a parent, there’s no good time to hear that your child is sick,” says Cindy Hadlich, Gracie’s mother. “We got the benefit of being more prepared, but we still didn’t know what the future held for us. Following Gracie’s birth, we transferred to Gillette Children’s Specialty Healthcare. The medical staff there put us at ease and it was the first time we felt like we had a plan.”
Of course, Chloe ended up going to Gillette, too.
Gillette Children's Specialty Healthcare is a national and regional leader in the diagnosis, care and treatment of spina bifida. For more information about the condition and the treatment provided at Gillette, please visit our website.
Five Years Later
Through five years of surgeries and doctor’s visits at Gillette, it’s quite likely that the Engstrums and Hadlichs passed each other in the hall on more than one occasion, but it wasn’t until they both attended the same Gillette Children’s Foundation event—the KS95 for Kids Radiothon—that they actually met.
“One of the staff members pulled us aside and said, ‘You’ve got to come meet this family’,” Chloe's mother, Ann, recalls. “All of the sudden, there we were, meeting Gracie and her family for the first time. Chloe and Gracie were both using crutches so they were right at one another’s level. They immediately started giggling and playing, and it’s basically been like that ever since.”
A Friend is Just a Bridge Away
The Engstrums live in Stillwater and the Hadlichs live in Hudson, so for Chloe and Gracie, a friend has always been just a bridge and short drive away.
“It’s really kind of incredible,” Ann says. “For the girls to be so close in age, have the same medical condition and live so close together, it’s hard to believe that it’s entirely possible they might never have met.”
Through the years Chloe and Gracie’s friendship grew, as they often spent time at one another’s home several times each month. When Chloe had a surgery, Gracie would visit her at Gillette. When the situation was reversed, Chloe was right there with Gracie. This bond affected their families as well, as their parents became fast friends.
“You know when Chloe and Gracie met, it was like they could see themselves in each other,” Gracie's mom, Cindy, says. “I think that happened for us too. It was so refreshing to spend time with parents who really understood what we were going through. We didn’t have to explain everything all the time. We could have discussions and share things with each other that we couldn’t talk about with other people. Now, we talk all the time, take vacations together, and consider one another family.”
Tiffany Cobb, PhD, a neuropsychologist at Gillette, says that this experience is not uncommon.
“Having a child who has a complex medical condition can be very isolating for parents as well as the kids themselves,” Cobb says. “It’s important for them to know that they’re not alone, and medical providers can only do so much. We don’t have all of the answers, so to know and have a relationship with a family that is experiencing many of the same things can be incredibly important.”
There is No Limit on Our Future
Chloe and Gracie are now making their way through their senior year of high school, and they’re excited for what the future holds for them.
In addition to looking forward to the independence that college will bring, Chloe hopes to work in the field of American Sign Language (ASL) and Gracie is interested in someday working at a school, potentially with kids who also have disabilities.
If you spend about 30 seconds with them, it’s safe to say that the state of the friendship is strong.
“I’ve always felt like Chloe and I speak the same language,” Gracie says. “I can talk to her about anything, and I know that she feels the same way. I feel like we were destined to be friends.”
“I think we’d be friends no matter what, but we both have spina bifida. Of course, we talk about it,” Chloe says. “But really, we just like being around each other. Our medical stuff has been complicated, but why we’re friends, isn’t.”
After we finished speaking and our photographer and I were about to head home at the end of what was a beautiful (and likely last), nice autumn day in Minnesota. I was saying goodbye to Chloe and Gracie’s parents.
I briefly looked over at them. They were sitting on a bench talking, laughing and holding hands. Like the oldest and best of friends. I smiled. Ann and Cindy turned, looked over, and smiled as well.
They said, “That’s just them. It’s the way they are when they're together.”