The Face Of CHD: Lotte
Nearly three years ago to the day, I read the beginning of Lotte’s story on Humans of New York. Ari was only 10 months old, and our wounds were still raw. I saw a couple that reminded me of us, and clicked. While their story paralleled ours in many respects, our paths ultimately diverged. Adam, Megan and little Lotte still inspire me and remind me of what is at stake.
Adam and Megan met “in Austria, on a train, in the snow”. Brandon Stanton, the photographer behind Humans of New York (HONY), captured a spirit of sophistication and irreverence in the pair as they walked along a snowy Fifth Avenue to ring in 2013.
Two years later, Megan would give birth to their first child, Lotte. Lotte had been diagnosed with Hypoplastic Left Heart Syndrome, a very serious congenital heart defect oftentimes referred to as “half heart”. While there have been significant improvements in surgical treatment and a corresponding increase in survival rates, still many babies do not survive (approximately 28% to 52% do not live to age 5).
Lotte was delivered via c-section and immediately underwent an 8 hour surgery. Although the surgery itself was a success, complications arose shortly thereafter, and she remained on a ventricular assist device known as ECMO (Extracorporeal Membrane Oxygenation) in the hope that her heart and lungs would recover with time.
Prolonged reliance on ECMO is risky however, and can result in everything from infection to organ failure and neurologic events. After Lotte suffered a brain hemorrhage, Adam and Megan determined that “mounting medical problems and the growing risk of additional complications made the chances of her recovering and leading a life of sound body and mind less and less likely”.
“Out of love for her, Megan and I made the terrible decision to discontinue the artificial support of her life on ECMO”.
This family’s story still brings me to tears, three years later. While we are so blessed that Ari’s journey ultimately diverged from Lotte’s destiny, we walked the same path. Shortly after Ari was diagnosed, we learned that the limited oxygen levels in her blood had caused several brain seizures, resulting in brain damage. We had no idea what the effects would be. We contemplated whether additional intervention was appropriate. We learned about the double-edged sword of the ECMO machine, and analyzed the risk it could further damage her brain, versus the reward of repairing her heart. This reality forces very profound, very consequential analyses on the value and meaning of life that affects everything that comes after, even if you are one of the lucky ones to come out on the other side.
I look at Ari and think about Lotte, and I see how chance events and seemingly small decisions can lead to diametrically different results. Both of these sweet girls remind me, every day, of Opheart’s and my purpose.
Upcoming OpHeart Event
First Pour Party of Ariana
Raise a glass to and of Ariana!
In support of OpHeart, local winemaker Nice Winery has created Ariana,
a Grenache Blanc and Viognier blend. Proceeds benefit OpHeart.
What: First Pour Party of Ariana
When: Tuesday, April 24
5:30 to 7:30 pm
Where: Cotton Club Collection
3941 San Felipe Drive
Tickets: Limited Free Tickets Available Here
By The Numbers
DONORstag: Get to Know Dr. Michael Winters & Kelly Penrod
“How can you hear the story of Ari, bear witness to a family’s near tragedy and their subsequent acts of great commitment and perseverance to save other children and not want to be involved?”
Dr. Winters is a practicing psychologist and Kelly, his wife and partner in life for 23 years, is a licensed counsel and communications coach who uses art as a tool of healing. Both Michael and Kelly base their work and own lives on the philosophy and teachings of neurologist, psychiatrist and Holocaust survivor Viktor Frankl. Dr. Frankl affirmed that the primary motivational force is the quest for meaning, and thus a meaning-centered life is inextricable from happiness.
The recognition and pursuit of meaning in both their professional and personal lives has led the couple on a unique and rich journey. Michael grew up in a loving family of 14 children, and is a twin. His mother played a significant role in his life, serving as a living example of a strong moral compass and instilling in her children the values of education, generosity, perseverance and utility. After receiving his PhD in Psychology from the University of Memphis, Michael began working at Rice University in the counseling center, where he would ultimately become the Director before stepping down to focus exclusively on his private practice.
Kelly began her career as a licensed chemical dependency counselor and worked for several years at The Right Step. Through her own quest for meaning, she saw an opportunity to connect with a broader group of people, and began developing her own meaning-centered program
based on compassion and an examination of each person’s particular needs. While Kelly still works with people to resolve chemical dependency issues, her approach also can be applied to communication difficulties, a common source of unhappiness for many. She has found that art provides a useful tool in self-understanding and ultimately self-acceptance, integral in the pursuit of purpose.
Micheal and Kelly are intimately connected to OpHeart since its infancy. They have not only supported OpHeart through very generous and consistent donations, but have also given abundantly of their limited time and enormous talents. They have attended all of OpHeart’s galas, not only as guests but as volunteers, spending countless hours stringing lights, building booths, even making faux cotton candy centerpieces.
Not only is OpHeart blessed to have Michael and Kelly as supporters of OpHeart, be we are all the better for having them walk this planet with us.
Learn More About Michael & Kelly:
OpHeart in Action: Early Detection Campaign
The United States lags behind every industrialized country- and some developing countries- regarding our ability to detect congenital heart defects prenatally. The consequences are deadly and costly.
OpHeart has assembled important tools for expectant families to increase the probability of early CHD detection and has a plan to increase prenatal detection from a national average of 15% to 50% in five years.
Your financial support funds big initiatives like this. Thank you.
Read More Here