Kansas City,
03
March
2020
|
20:36 PM
Europe/Amsterdam

From Life Support to a Lifetime Impact: One Family’s ECMO Story

Every year on his birthday, 29-year-old Michael Thogmartin’s parents have told the story of his birth. This story, which has become famous in the Thogmartin household, is how Michael became seriously ill after being born, and just hours later was on life support.

“After I had him, all of a sudden we realized something was wrong,” said Debbie Thogmartin, Michael’s mother. It was his lungs. Michael wasn’t breathing properly and would need an emergency transport to Children’s Mercy in Kansas City. The doctor brought him back into the room so Debbie could see him before they left. “At that point no one knew what was going to happen, and she wanted to make sure that I would get to see my son.”

It was too foggy to go by helicopter, so he was transported by ambulance for the nearly 100-mile journey from the hospital in Trenton, Missouri, where he was born. The doctor who delivered Michael went in the ambulance, manually breathing for him with a bag valve mask. “She knew that was the only way to keep him alive,” said his mother, who had to remain in the hospital recovering from a cesarean section.

His father, Marty Thogmartin, followed the ambulance to Children’s Mercy. When they arrived, he was faced with a decision he wasn’t prepared for. “The doctor came in to talk to me for the first time and asked me about putting him on the ECMO machine. Of course, we had no idea what that was,” he said.

ECMO, or extracorporeal membrane oxygenation, is the highest level of life support. ECMO doesn’t cure illness. Rather, it does the work of the heart and lungs for you, allowing the body to rest and hopefully, overcome the underlying issue.

Marty was told that Michael had about a 10% chance of survival. “We’ve got to do this. Let’s do it,” he decided.

A Surreal Experience

For the next three days, Marty drove between the hospital in Trenton, where his wife was recovering, and Children’s Mercy, where Michael was on ECMO. “It was surreal,” he said about his newborn son being on life support. “Here’s this little baby that I have no connection to in a way because I didn’t get to hold him or anything.”

But Marty was supported and encouraged by the providers caring for Michael. “They were wonderful,” he said, recalling the many positive conversations and interactions that kept him in good spirits.

After three days, Debbie Thogmartin was finally able to travel to Children’s Mercy to be with Michael, but because of the machine, he still couldn’t be held. “All I could do was put my pinky in his hand,” she said. Marty had to return to work while she remained at the hospital, sleeping at the nearby Ronald McDonald house at night.

“Families whose babies are on ECMO, their babies are dying,” said Barb Haney, ICN Clinical Nurse Specialist, ECMO Clinical Leadership Team. “You don’t know if it’s going to work until they get on (the machine) and are stable and then you don’t know until they get off if they are going to survive,” Barb said.

And so, Debbie Thogmartin sat praying next to her baby each day, her pinky in his small hand.

The Making of a Household Name

Barb was the ECMO coordinator in 1990 when Michael arrived. The program was just three years old and only treated a handful of patients each year. “If you needed something in the middle of the night, you called Barb,” said Debbie Newton, director of the current ECMO program. “When there was a child on ECMO, Barb was there.”

At the time, the program only treated babies in the neonatal ICU. “Families are on a roller coaster, their emotions are all over the place, up and down,” said Barb, who became very close with the families and was intimately involved with the program. “That was really my whole life for many years.”

She was with the Thogmartins throughout Michael’s stay, making sure that they were taken care of.

Debbie Thogmartin recalls the meaningful things that Barb and the team did for her, from constant updates on Michael, to finding someone to remove her C-section staples so she wouldn’t have to leave the hospital to drive back to Trenton. “They just took such good care of me,” she said.

Those memories have become tightly connected to the story, creating positive impressions of what would have otherwise been a parent’s nightmare. “You’re just doing your job, you don’t know the impact that you had,” said Barb.

A Happy Ending and a “Miracle Baby”

“They told us that if everything went well, he’d be in the hospital six weeks or longer,” said Debbie Thogmartin. But after 11 days, Barb delivered the good news: Michael was doing fine and was ready to be released.

The Thogmartins were educated about how to monitor him at home and the importance of follow-up services. Babies that have been on ECMO or have spent a lot of time in the NICU are at a risk for certain complications, including hearing problems and learning disabilities.

“But he didn’t have any of those issues,” said Debbie Thogmartin, noting that Michael had a very healthy childhood and grew up without any major health problems. “He’s been our miracle baby, and that’s what we call him.”

And so, the story told each year that begins with an emergency transport on a foggy night, concludes with a very happy ending.

Reunited Nearly 30 Years Later

As Barb Haney’s name became synonymous over the years with the story of his first days, Michael started to understand her impact on his family.

“Of course, Michael had never known Barb because he was such a little thing,” said Debbie Thogmartin. “But we talked about her every birthday. He heard it for years because we had such a wonderful experience at Children’s Mercy. He felt like he knew her.”

The impression was so strong that last year, Michael decided to track her down for a surprise reunion with his family. “I wanted Barb to know that even after all these years she’s had a longstanding impact,” Michael said. Knowing how important she and Children’s Mercy were to his parents, he thought it would be the perfect Christmas present.

He started asking around and discovered a colleague that had ties to Children’s Mercy and Debbie Newton. “Somehow an email got to me asking if I wanted to do something to honor Barb Haney,” said Newton, who connected with Michael to arrange the reunion.

Michael wanted to make it a surprise, but his mother had said that if she ever got to meet Barb again, she’d want to give her something special. He decided that it was more important to let her prepare than to surprise her. “I just wanted to make sure that my parents got everything out of it that they wanted,” he said.

Last December, they met for lunch at a local restaurant. The Thogmartins – Debbie, Marty, Michael and his wife, Marissa – were seated when Debbie Newton and Barb arrived. It had been nearly 30 years since they last saw each other, and Barb recognized Debbie Thogmartin immediately.

Over lunch, all the stories were told again. “It was a very good feeling to finally put a face with the name I’ve heard so many times,” said Michael.

“It was lovely, they were very grateful, and their stories were just so crystal clear, like it just happened yesterday,” said Debbie Newton.

“We all kind of got teary and choked up,” said Barb, who listened to Debbie Thogmartin recall all the things that she and the team did for her that meant so much during that difficult time. “It’s just so humbling that I’ve had the opportunity to be a part of their lives.”

A Lasting Impact

For Michael, hearing the story his whole life has given him an appreciation that has followed him into his career as a Physician Alignment Executive at Cerner.

“The experience (my parents) had at that time – that I’ve been told over and over again every year, coming up on my 30th birthday, is exactly why I do what I do at Cerner,” said Michael, who feels his family’s experience helps him build relationships with clinicians. “I know how big of an impact a provider can have on a family.”

The reunion was an inspiration for Debbie Newton, who knew of Barb’s impact from her long tenure with the program but was moved by witnessing the gratitude of Michael’s parents. “It was such a good example for me for why we do what we do,” she said.

The current ECMO program has grown significantly since Michael was there, now treating around 50 patients per year, including older kids and teenagers. Barb shares the Thogmartin’s story and their reunion with people she works with and incorporates it into training.

She hopes it will inspire others that what may seem like small gestures can lead to a positive experience and a lifetime of memories. “You just don’t know the words, the looks, the touches, the little things like a glass of water or a simple explanation, you just don’t know the impact that that has for the entire life of someone else,” said Barb.

And that special gift that Debbie Thogmartin wanted to give to Barb? A carved wooden angel statue, now sitting on Barb’s mantle at home. A treasured reminder of her lasting impact and the inspiration for a family’s story.