On March 30, 2023, Michael Henter walked into Iowa Methodist Medical Center for an echocardiogram completely unaware of the events that would proceed.
Michael had recently graduated from University of Northern Iowa and moved back home to start a career in commercial real estate. He decided to establish care with a primary care physician in Des Moines, IA. He felt great and was in perfect health, but thought he needed to find a doctor to see on a yearly basis. During that appointment, Michael had a routine physical. The doctor took extra time while listening to his heart. She heard a murmur. Michael’s doctor encouraged him to go have an ultrasound done on his heart (echocardiogram, or echo for short).
During the echo, the radiology tech left the room and eventually returned alongside a cardiothoracic surgeon. The surgeon told Michael, “You have an aneurysm. You’re going to go to the ER, do some more imaging, and you’re going to stay the night.” Michael did as they said, and Thursday night, a CT scan confirmed Michael’s condition. Michael had a massive 8.3 cm ascending aortic aneurysm and open-heart surgery would be indicated.
An aneurysm is a ballooning or dilation of a blood vessel. This often happens in the aorta, the blood vessel that comes out from the heart and supplies blood to the rest of the body. It is a strong, powerful vessel, vital to one’s life. The ascending aorta is the part of the aorta that comes directly out of the heart. It connects to the aortic arch followed by the descending aorta which travels down into the abdomen supplying blood to your gut, liver, kidneys, etc. The ascending aorta is separated from the heart by the aortic valve. With every heartbeat, the aortic valve opens and closes like a door ensuring there is no backward flow of blood. An aortic aneurysm, if large enough, and if it ruptures, is almost always fatal. The ascending aorta is typically 2 cm, which gives you a feel for how massively expanded Michael’s aorta was (more than 4 times normal). This usually occurs in someone who is in their 60-70s and is caused by smoking and/or high blood pressure, none of which were a factor in Michael’s case, making his condition extremely rare.
The next day, Michael underwent a transesophageal echocardiogram (TEE) in order to get a better picture of his heart. The TEE showed severe aortic regurgitation as well as the aneurysm. Like I said before, the aortic valve acts as a swinging door. Regurgitation would be as if the door didn’t latch correctly. There are many reasons this may occur such as a problem with the door itself (valve malformation) or a problem with the door frame (an aneurysm). The TEE suggested there was no issue with the valve itself and the door frame needed to be fixed. After the surgeon reviewed the TEE results, he recommended a “valve-sparing aortic root replacement”. This procedure is not done in Des Moines, so Michael would be transferred to the Cleveland Clinic.
Michael was transferred on Monday, April 3rd. He met with cardiologists, surgeons, and geneticists. They were all determined to find a cause of this massive aneurysm in a healthy, young man. After an assessment of Michael’s physical characteristics, the geneticist theorized that Michael had Marfan Syndrome, a connective tissue disorder that affects many organs such as the bones, eyes, and the aorta. Michael had many characteristics of Marfan's Syndrome including scoliosis, stretch marks, flat feet, double joints, long fingers, concave chest, arched palette, and the aortic aneurysm. The team recommended genetic testing to confirm the diagnosis. After more tests and two long days of waiting, Michael had a valve-sparing aortic root replacement on April 6th. The open-heart surgery was successful and without immediate complications. Michael stayed in Cleveland for eleven days following his surgery and was discharged on April 14th. Michael and his mom flew back to Des Moines ready for a couple long months of healing and recovery.
The unthinkable happened on April 16th. Michael suffered a cardiac arrest at home and was rushed to the hospital. Doctors determined a blood clot had blocked one of the arteries in his heart resulting in the tissue of his heart being deprived of oxygen. Despite numerous efforts to save his life, Michael passed away on April 17th surrounded by family and friends.
The night of April 17th, the hospital called and made us aware Michael was an organ donor, and if we agreed, he would be able to donate his corneas. We agreed Michael would absolutely want to help someone, thus two people received cornea transplant and now see the world a little clearer.
A few days later on April 21st, Cleveland Clinic called. The results of the genetic testing concluded Michael had an FBN-1 gene mutation (fibrillin-1) suggesting a diagnosis of Marfan Syndrome. Interestingly, the mutation was not the classic mutation found in other patients with Marfan, in fact, the mutation is one the Cleveland Clinic had never seen before. We were thankful for a diagnosis, but heartbroken it wasn't addressed sooner. We will never know if an earlier diagnosis would have meant more time with Michael.
"I want to start a foundation."
Before Michael’s surgery and after learning about the possibility of Marfan Syndrome, Michael felt called to start an organization to educate the public and spread awareness of the genetic disorder. He dreamed of being a resource for the community and having a golf outing to raise money. After Michael passed, his family decided to honor Michael’s wishes, and the organization Michael dreamt of is now called the Michael Henter Foundation. Our mission is to raise awareness of aortic disease and Marfan Syndrome, and to be a catalyst for positive change, supporting and empowering individuals affected by these conditions. Since our establishment in 2023, we have been driven by our core values of compassion, advocacy, education, and progress. Inspired by Michael Henter, himself, the Michael Henter Foundation was created to make an impact and save lives.
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