How a medical diagnosis for one of her children was a springboard for Diane Feinauer into the medical community.
By Graham Garrison
Within a span of 10 minutes Diane Feinauer and her husband Jonathan were given two life-changing bits of news. The first was that a 20-week ultrasound revealed they would be having twins.
But before they could really digest and celebrate that news, they received the second update from the ultrasound. One of the twins, Jacob, had a malformed heart and his stomach was on the wrong side of his body. “My world began to spin,” said Feinauer. “How was my precious baby going to survive with just half a heart?”
The ultrasound would change the Feinauers’ lives in many unexpected ways, leading to countless hospital and doctor visits, multiple surgeries, advocacy efforts – and ultimately into her role as a territory manager for MTMC.
A season of miracles
Following the ultrasound, Feinauer was immediately given two amniocentesis tests, one for each twin, to find out if there was a genetic problem and if the twins were identical. Three weeks later, the results revealed that the twins were not identical and Jacob’s heart defect was not genetic.
“This was our first miracle,” said Feinauer.
The family met with a pediatric cardiologist at 23 weeks. The cardiologist quickly diagnosed Jacob with double outlet right ventricle (DORV). He also noted that Jacob’s heart was backwards and that his great arteries, the primary arteries that carry blood away from the heart, were transposed. He then explained that he had the suspicion that in correlation to Jacob’s heart condition he also suffered from a form of heterotaxy syndrome, a condition in which the internal organs are abnormally arranged in the chest and abdomen. “It was very rare, but we wouldn’t know until he was born the extent of his medical concerns,” said Feinauer. “With that information, we waited for the arrival of our twins for another four months.”
Feinauer was monitored very closely by a perinatologist and had to go into the hospital three times a week for non-stress tests. At 33 weeks, Jacob’s sac had no amniotic fluid left in it and Feinauer was rushed to the University of Utah for an emergency C-section to save Jacob.
When the twins were born, Jacob’s brother Jackson was 5 pounds, 6 ounces, while Jacob was 3 pounds, 12 ounces. Jacob had a Blalock-Taussig (BT) shunt placed in his heart at three days old. “He was so little, I don’t know how he survived it, and we started our 24-hour care clock,” said Feinauer. “We had a newborn at home and a newborn in ICU for almost two months.”
When they ran tests on Jacob after he was born, the heterotaxy syndrome was confirmed. “Essentially, the best way to describe Jacob’s version of the syndrome is to say that the right half of his body’s organs developed and then multiplied,” said Feinauer. “Jacob has two right lungs, two right kidneys, a transverse liver across his abdomen and a single-ventricle heart defect. Because his left side didn’t form, he has no spleen, which puts him in a high-risk category for bacterial infections. Despite all of this, Jacob came out fighting and eating. Our next miracle.”
At six months old, Jacob had a heart procedure, and due to his multiple systemic to pulmonary artery collateral networks, he almost died. A cardiologist performed an emergency coil occlusion the day after his heart surgery to save his life. “It was our only option left,” said Feinauer. “It somehow worked.”
Another miracle. Jacob left the hospital almost three weeks later.
All told, Jacob has had three open heart surgeries. He is not a great candidate for a heart transplant due to his anatomy, but the Feinauers are hopeful that future medical advances will lead to a breakthrough. In the meantime, he is living a healthy and active life as a 16-year old athlete. Jacob was playing competitive soccer and varsity golf for his high school prior to COVID.
He was also going to school. With the COVID pandemic, the Feinauers have been incredibly cautious, but Jacob has been healthy throughout. “We were extremely careful about his exposure to germs and slowly started exposing him around the age of five,” she said. “It’s similar to what we are dealing with right now. We went back to what we knew early on. The CDC recently came out with guidelines on children, and with Jacob being 16, is still classified as a child. Congenital Heart Disease is identified as an underlying condition for severe COVID-19, so essentially we are keeping him isolated.”
Getting involved
When Jacob entered the public school system at 5 years old, Feinauer noticed that Jacob’s elementary school didn’t have the resources to get an AED. Although a lot of the high schools in the Salt Lake City area had AEDs, there was nothing to protect kids that were born with congenital heart defects, she said.
Feinauer’s background was in marketing. When she realized the public school systems didn’t have funding for AEDs, she used her experience to launch Tender Heart Beats to lobby the legislature for funding, and also work with private donors to get AED placements throughout the valley in Salt Lake City and all Utah public schools. “The legislature did fund it,” she said. “So we were able to get AEDs throughout all of the schools in Utah.”
Understanding that Jacob would be in and out of hospitals the rest of his life, Feinauer got involved in multiple areas of volunteer work to increase awareness of CHD and to work directly with families that are facing that diagnosis with their children. She has served several organizations in differing ways in the community.
Organizations she helped found:
- Camp Hawkins: A camp for kids and siblings
with CHD. - Tender Heart Beats (THB): An organization dedicated to placing AEDs in all schools in Utah and raising money for CPR babies for Primary Children’s Hospital.
- Intermountain Healing Hearts (IHH): A support group for families of children and adults with CHD in Utah and the Intermountain West.
Organizations she has served or represented:
- MOD SQUAD (Mothers for Organ Donation) Intermountain Transplant Team
- American Heart Association
- Primary Children’s Hospital Family to Family Volunteer Program
Entering medical sales
As Jacob would eventually transition into adult care, Feinauer desired to work with healthcare providers in a different way to build relationships, and understand their priorities, outside of just being a patient. It led her to a medical field sales role with MTMC in the acute care segment.
“It was a great fit because MTMC calls on every call point in the hospital,” she said. “I could have high-level meetings and understand how hospitals function, what directives and priorities they had, and line that information up with what was important to our family and Jacob’s care. I was eager to get into my hospital accounts, learn and understand.”
Feinauer said balancing her medical sales role with family life has been both rewarding and challenging. “I cover a large geography which means time away from the family and the kids,” she said. “But they were also at an age where they needed to start gaining some independence away from me.”
However, her experience with her accounts has given the Feinauers access to resources that they wouldn’t otherwise know about. For example, Jacob occasionally requires infusions for electrolytes, or if he gets too dehydrated. By building relationships with infusion centers, the Feinauers have a better understanding of whether they need to take Jacob to the ER for a dehydration moment. “It’s been a real gift to be able to understand better the resources available,” she said. “Even though I’m spending precious time away from Jacob and the other children, I’m learning how to help him long term. At the same time, I’m educating myself to better understand what we will face in the next phase of his life.”
In more than four years, Feinauer has been a multi-time sales award winner for MTMC. She attributes her success to having a close connection to her accounts. “I’m looking to build genuine relationships with my accounts.” she said. “I want to understand their challenges and help them problem-solve. Understanding, at some point we could be patients in some of these accounts enables me to look at it from both perspectives – the perspective of the patient and the perspective of the hospital. I try to see the total landscape; what they’re up against, the financial challenges, and also understanding patient care is critically important to them.”
Sidebar:
Some facts surrounding congenital heart defects (CHD):
- CHDs affect nearly 1% of – or about 40,000 – births per year in the United States.
- About 25% of babies with a CHD have a critical CHD. Infants with critical CHDs generally need surgery or other procedures in their first year of life.
- CHDs are a leading cause of birth defect-associated infant illness and death.
- Infant deaths due to CHDs often occur when the baby is less than 28 days old (sometimes called the neonatal period). In a study of neonatal deaths, 4.2% of all neonatal deaths were due to a CHD.
- The prevalence (the number of babies born with heart defect compared to the total number of births) of some CHDs, especially mild types, is increasing, while the prevalence of other types has remained stable. The most common type of heart defect is a ventricular septal defect (VSD).
- About 97% of babies born with a non-critical CHD are expected to survive to one year of age. About 95% of babies born with a non-critical CHD are expected to survive to 18 years of age. Thus, the population of people with CHDs is growing.
Source: CDC website
Photo captions for last three images in story:
- Feinauer has been involved in multiple areas of volunteer work to increase awareness of CHD.
- Feinauer has been a multi-time sales award winner for MTMC.
- Feinauer said balancing her medical sales role with family life has been both rewarding and challenging.