Jaden’s Story

Site created on June 28, 2018

Jaden was diagnosed at age 4 with Hypertrophic Cardiomyopathy during a routine preschool check-up.  Hypertrophic Cardiomyopathy (HCM) is a thickening in the heart muscle (usually located in the left ventricle) which affects the blood flow to the heart.  It is usually considered genetic, however, we have not confirmed it anywhere in our family yet.  Jaden was initially diagnosed by Dr. Chandramouli at Pediatric Cardiology in Des Moines .  In 2008 we decided to get a second opinion at the University of Iowa where the same diagnosis was confirmed . In 2013, we decided to bring Jaden to Mayo Clinic in Rochester because they are considered a center of Excellence for this disease and have an actual HCM clinic.  From 2014 until now he has been followed by Dr. Erik Edens at the U of Iowa.  We recently we received a letter informing us that he would be leaving the U of I so we decided to bring Jaden back to Mayo for his yearly check up and see Dr. Michael Ackerman. He is a doctor that has spent a lot of time studying HCM and the genetics involved with the disease.  He has also spent a lot of time assessing the risk of sudden cardiac death in children. We were seen by him on May 30th to find out that Jaden's disease has progressed enough to need surgical intervention.

Newest Update

Journal entry by Tiffany-Jerad Norman

On Wednesday, we saw Dr. Ackerman, Jaden's pediatric cardiologist, to review his yearly testing.  He always asks a lot of questions, writes things down, and then dictates right in front of us so we can hear what goes in Jaden's electronic medical record.  That process is how we found out Jaden needed open-heart surgery, and this time, we found out that Jaden's heart has completely healed from surgery and everything, aside from occasional SVT, is functioning NORMAL. I don't believe that we have ever heard that so it was exciting to hear. He can continue everything with NO RESTRICTIONS!!  Dr. Ackerman wants to follow up again in 1 year, and if all looks good, he will only need to see Jaden every other year! Whoo Hoo!!

Below is an article showing Dr. Ackerman's character and why we choose him for care.  Not only is he a fantastic doctor, but he is a compassionate, authentic person that wants his patients to have the best quality of life and give them hope!!  There is no doubt, Jaden is living life feeling the best he ever has thanks to many prayers and some phenomenal doctors.

May 9, 2009
A Prom Promise Kept
By Traci Klein

Dr. Michael Ackerman and Stefani

As an 8-year-old girl from Michigan was headed into surgery for a heart transplant, she asked Mike Ackerman -- a pediatric cardiology fellow at Mayo who was part of her care team -- if she was going to live. Dr. Ackerman said, "Of course you're going to live, and I'm going to dance with you at your prom."  Ten years later -- on April 25, 2009 -- Dr. Ackerman flew to Michigan to surprise Stefani Pentiuk at her senior prom to fulfill a promise made years ago.

I've known Dr. Ackerman for about three years, working with him on news releases for his research published in scientific journals and on patient stories with the media. What has struck me about Dr. Ackerman is how beautifully he connects with his patients and their family members. His interest in helping them and getting to know them is incredibly genuine -- and his memory of his patients, their specific circumstances, and personal stories is amazing. So when he told me about Stefani and that he was traveling to Michigan to surprise her at her prom, I was not surprised.

On the Monday after prom, I talked to Stefani by phone. She told me that when she turned around and saw Dr. Ackerman at her prom, she immediately recognized him. "I would know him anywhere," she said. And then she cried -- which Stefani doesn't do often. "I was so filled with emotion."  After sharing a hug, Stefani's principal announced that a song would be played for Stefani and her friend. Rascal Flatts' "Bless the Broken Road" began playing.  Not long after the dance, Stefani's dad, Perry, drove Mike five hours to Detroit to catch a plane to Florida, where he was speaking the next day. The group he was speaking to even rescheduled the time of Dr. Ackerman's talk, enabling him to be at the prom the night before. Everyone but Stefani seemed to be in on this surprise -- and helping to make it work.  But there's more. Even before Dr. Ackerman entered little Stefani's life, Mayo cardiologist Martha Grogan did. She has vacationed in Stefani's town since she was a young girl herself. In 1999, friends told Dr. Grogan about this young girl who was diagnosed with dilated cardiomyopathy and may need a heart transplant. The friend encouraged her to call the Pentiuks. So on a day when Stefani's mom, Heidi, was very worried about Stefani's health, the phone rang, Dr. Grogan, on the other line offering her help as a cardiologist. Eventually, she helped the Pentiuks, including older sister Anna, bring Stefani to Mayo. "I don't feel like I was doing anything special," Dr. Grogan said. "I just wanted to see if I could help."  Both Dr. Ackerman and Dr. Grogan say they didn't do anything special. Many beg to disagree. But part of the reason they say that, I think, is because of who they are personally but also because many people at Mayo -- whether physicians, nurses or staff members at the front desk -- go above and beyond. It's part of the culture. This prom promise story is obviously a one-in-a-million story, but it's also a reflection of what we are empowered to do here in our daily work at Mayo -- to make a difference in a person's life.  And it's a keen reminder to all of us that there is power in words when a person is ill and needs to hear a caring, genuine and hopeful message.

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