Parents of son with spina bifida share how Mayo Clinic changed their lives and his

When an ultrasound technician informed Kalyn and Derek Heimerl that their baby had spina bifida, they were shocked. Six weeks later, they traveled to Rochester for a prenatal spinal closure procedure. Today, Landon is an adventurous and happy-go-lucky toddler who brings joy to everyone he meets. 

When Kalyn Heimerl learned she was expecting her first child, she thought she would have an ordinary pregnancy and delivery. She and her husband, Derek, are active and take great care of their bodies, so she had no reason to believe anything would be wrong.

At 19-weeks pregnant, that all changed.

Kalyn arrived at a local medical center in Madison, Wisconsin, for her mid-pregnancy anatomy scan. In the middle of her scan, she noticed a change in the room.

"All of a sudden, the ultrasound technician started taking longer and left to get help," Kalyn says. "When she came back, there were several others with her."

That's when Kalyn learned her baby showed signs of spina bifida, a condition that occurs when the spine and spinal cord don't form properly. With no family history of spina bifida, Kalyn and Derek were shocked at the news.

"We were like, 'What does that mean for us? What do we do?'" Kalyn says.

Thoughts of how they would care for a child with disabilities and how the diagnosis would affect their lives and the child's flooded their brains. Would they need to configure their house for a child with a disability? What would this child's needs be? Would they be able to walk?

Many questions without clear answers made the news even more challenging to accept. The Heimerls clung to their faith. They had quick decisions to make.

Kalyn's maternal care team said they had two options. They could do a postnatal spinal closure after the baby was born, or they could potentially have a prenatal spinal closure while the baby was in utero.

"They told us they are well-connected with Mayo Clinic, and if we wanted to do the prenatal spinal closure, they would take care of all of our initial testing to determine if we were good candidates for the procedure, and if we were, we could go there," Kalyn says.

It was a tough decision.

"I don't know this person inside of me, and I have to make a life or, potentially, death — because that was the worst-case scenario of in-utero surgery — decision for them," Kalyn says.  

The Heimerls decided to explore the possibility of a prenatal spinal closure. 

Preparing for the procedure of a lifetime

Kalyn had many more ultrasounds to confirm that she and the baby were good candidates for the procedure. Then they were referred to Mayo Clinic.

"Our care coordinator worked with 'the Jens' (nurses Jen Aschoff and Jen Anderson) at Mayo Clinic to get everything figured out, make sure we had all the necessary testing, and get us over there," Kalyn says. "That was nice that they coordinated all of that and bridged that relationship."

Over the next several weeks, Kalyn had several calls and visits with Mauro Schenone, M.D., chair of Mayo's Division of Maternal and Fetal Medicine, who partners with neurosurgeon Edward Ahn, M.D., on these procedures.  

Dr. Schenone described what the procedure would look like and various unlikely but possible scenarios, such as what would happen if she did have to deliver her baby on the day of surgery.

"There were nights when Dr. Schenone would call us at 8 or 8:30 p.m. to talk through everything and answer our questions," Kalyn says. "He and the Mayo Clinic nurses and other staff took their time to talk to us. They made us feel like they cared about our baby just as much as we did."

He (Dr. Schenone) and the Mayo Clinic nurses and other staff took their time to talk to us. They made us feel like they cared about our baby just as much as we did.

Kalyn Heimerl

Dr. Schenone says getting to know his patients and their families and empowering them with the knowledge they need to make informed medical decisions are important to his practice.  

Feeling informed about the procedure and accepting every possible outcome, the Heimerls were ready to proceed. Six weeks after the diagnosis, they packed their bags and headed to Mayo Clinic in Rochester.

Kalyn had the surgery on May 13, 2021. It was her first-ever surgery.

After the procedure, she remained an inpatient for a week and then stayed at a hotel nearby for two weeks before returning home, where she spent the rest of her pregnancy on modified bed rest.

"Because it was my first surgery, I went in a little bit naïve. The recovery was harder than I expected," Kalyn says. "I felt like I had gotten a tummy tuck. I couldn't move around much and longed for the days I could do house chores again."

Kalyn's parents moved in temporarily to help.

"Toward the end, I didn't sleep much. I pretty much sat in a chair all night," Kalyn says. "I remember thinking, just be pregnant one more day."

She says she would do it all again if she had to.

Racing to the finish line of pregnancy

Kalyn had a scheduled cesarean section on July 27, 2021, at 36 weeks pregnant because her procedure increased the risk of uterine rupture.

"We got to pick the baby's birthday, which was special," Kalyn says. "My mom's lucky number is seven, my dad and grandma were born on the 27th, and my in-laws' anniversary is the 27th," Kalyn says.

She felt like it was meant to be.

That day was also the day they finally learned the gender of their baby — a secret kept their entire pregnancy by their local and Mayo care teams — a boy, Landon Heimerl.

A wave of relief crashed over Kalyn the moment she saw him.

"He went to the NICU right after he was born, but I remember feeling relieved. He's OK. He's here. He's born," Kalyn says.

Kalyn also noticed that his back was completely healed from the procedure, which was another relief.

"He didn't have an open lesion or anything," Kalyn says.

At the top of Kalyn's hospital bag was a finish line tape from a half-marathon she had run. She removed it from the bag in celebration of Landon's arrival.

"We were celebrating making it to the finish line — he was here," Kalyn says.

Landon spent some early days in the NICU and graduated after mastering breathing, feeding and learning to regulate his body temperature.

As they were leaving the hospital, the Heimerls stopped to take a photo in front of a bed of beautiful blooming sunflowers. Sunflowers are the flower most associated with spina bifida. It was the perfect start to their journey raising Landon.

Raising Landon and a reunion trip to Mayo Clinic

Landon will be three years old this summer, and Kalyn says his condition has not slowed him down yet. Quite the opposite.  

Kalyn says Landon is social, full of life and loves adventures.

"He loves traveling and going places. He has already been to several airports and a Badgers game," Kalyn says. "There was also a time when I couldn't go into grocery stores without him playing peek-a-boo with strangers or saying 'Hey, how are you?' to everyone who passed."

Most recently, Landon has been interested in Kalyn's marathon training and Derek's Iron Man training and often imitates them.

"He will run around our kitchen island and pretend he's in a race," Kalyn says. "Or he will put on his helmet, get on his bike, and ride around on it."

In 2022, when Landon was a year old, Kalyn made an appointment to see Dr. Schenone so Landon could meet him.

"I wanted Dr. Schenone and the others at Mayo to meet Landon because what they did, the stuff they helped us through, is why he is where he is today," Kalyn says.

"They were there with us through the hardest time of our lives, and we really created a bond with them," Kalyn says. "We love them. We do."

Looking ahead with hope and gratitude

Kalyn doesn't know what Landon's future holds, and of course, as any mom would, she worries about how his condition might affect his life and confidence as he gets older.

She wonders about what she will tell him when he wants to get into sports, how she will explain why he does intermittent cathing when other kids don't, if other children will tease him about the scar on his back, and if his ankle movement, which is on the weaker side now, will worsen with age.

"These are some of the things I worry about as his mom," Kalyn says.

Still, Kalyn is hopeful. She and Derek are prepared to support and love Landon through whatever the future holds and know his bright light will bring so much joy to this world.

Kalyn shared they are expecting their second baby this fall and her anatomy scan is next week. She says they have a higher chance of having another child with spina bifida, but it's not something they fear anymore. Not like on the day they got Landon's diagnosis.  

"We are not afraid," Kalyn says. "Landon has brought so much joy to so many people, and us and our family, and I'm not going to take that away."

Kalyn thanks Mayo Clinic for helping her and Derek transform what seemed like an overwhelming diagnosis into a life of possibilities for Landon.

"We couldn't have done this without our Mayo family," Kalyn says.

Dr. Schenone says stories like the Heimerls are what the operation is all about.

"The MMC (myelomeningocele) repair program offers families hope and relief, transforming what is a daunting diagnosis into a journey filled with possibilities and improved outcomes," Dr. Schenone says.