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My Story: Moving from Pain to Purpose

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As part of its monthly My Story series, the Turner Syndrome Foundation (TSF) highlights individuals with Turner Syndrome (TS) and their loved ones/caregivers. This month, it is an honor to share Bill’s story. His late wife, Jennifer, had TS and passed away from an aortic dissection in 2020. Bill and Jen’s story highlights the importance of TS awareness and specialized treatment. This moving story highlights Bill’s journey from pain to purpose–educating others about the necessity of cardiac care for those with TS.

Note: Everyone’s journey with TS is different. Please consult your health care provider(s) for guidance regarding your individual health issues and appropriate treatments.

Remembering Jen​

 

This is a story about my wife, Jennifer (Jen). I met her in the spring of 1994, and we married in April 1998. Jen was intelligent, beautiful, compassionate, and had a smile that would warm your heart. While we were dating, Jen told me she had been diagnosed with TS when she was about 16 and that she would never be able to get pregnant.

Jen did have some traits related to TS: short height (she was 4’9″), webbed fingers and toes, and inner ear problems that caused her to wear hearing aids most of her life. But  none of that mattered to me. All of Jen’s positive attributes far outweighed her supposed “deficiencies” related to TS.

Jen, circa 1977 (approx. 11 years old)

Our Life Together

Jen and Tyler, Christmas morning 2015

Jen and I adopted a son, Tyler, as a newborn in 2003. He is currently 17 and a junior in high school. Jen loved being a mom and would do anything for Tyler. She was a big supporter of his playing baseball and learning karate. We took many family trips together, mostly to the beach, but also to Disney World; Baltimore; Washington, D.C.; the Little League World Series; the Baseball Hall of Fame; Niagara Falls; and one of our personal favorites, Toronto.

As a result of having TS, Jen had regular appointments for hormone replacement therapy. She also had regular appointments with an ear, nose, and throat doctor, who performed a couple of surgeries on her inner ear that slightly improved her hearing. Jen kept herself in great shape and would power walk almost every day. I never walked with her because I couldn’t keep up. Honestly, Jen didn’t like talking about having TS; she didn’t want her diagnosis to define her as a person. She and I didn’t talk about it that often. We didn’t know about TSF or, unfortunately, about the importance of regular cardiac care.

Bill & Jen at Niagara Falls, 2016

The Day Everything Changed

Jen, Tyler, and Bill at Little League World Series in Williamsport, PA in 2018

On February 7, 2020, Jen was taking Tyler to work, and then she was going grocery shopping. I was home, preparing to go to the gym. About 10 minutes after they left, Tyler called me to tell me they had been in an accident after Jen had passed out at the wheel. Fortunately, they were not going too fast, so none of the airbags deployed. Tyler actually had to steer the car off the road to avoid oncoming traffic. He did not sustain any injuries in the accident. When I arrived at the scene, Jen was in the ambulance, a little dazed but conscious. 

At the hospital, they quickly ran a battery of tests and discovered the cause of the accident: Jen was suffering an aortic dissection, and they rushed her into emergency surgery. Sadly, she did not survive the surgery. The doctors recorded the official cause of death as hypertensive cardiovascular disease/aortic dissection. In the blink of an eye, our lives changed completely–I lost my beloved wife, and Tyler lost his mother. Jen was 53.

Grieving and Learning

In the midst of all the shock and sadness I was experiencing, I started to surf the Internet to learn as much as possible about TS and its link to aortic dissection. I was stunned at how common it is and how often it goes undiagnosed. Not one time did Jen’s doctors mention that she needed to see a cardiologist regularly. In fact, it surprised me that the medical professionals I spoke to (I work in finance at a hospital) knew very little about TS. Sadly, Jen’s primary care doctor knew nothing at all about the condition and never bothered to do any research on it. Hearing this from him only a week after Jen passed was like a gut punch.

I keep rehashing the last few days, weeks, and months to ask myself if there we signs we missed or just ignored. Jen never had high blood pressure and would only suffer back pain after she did housework for long periods of time. She was sick that week with what we thought was a winter cold. The only thing that was slightly different was that she was having bouts of dizziness, which we attribut3ed to an inner-ear infection.

The fact that Tyler had been sick a couple of weeks earlier with a double-ear infection only reinforced our belief that Jen’ had a cold. According to the physician who performed Jen’s surgery, the dizziness was probably the beginning of her aortic dissection.

Facts about Aortic Dissection

  • Coarctation of the aorta is the narrowing of the large blood vessel (aorta) that leads from the heart.
  • Aortic dissection is a rupture or tear of the aorta.
  • Many people have no symptoms until it is detected in adulthood.
  • TS is the most common established cause of aortic dissection in young women, but the connection has received little attention outside of pediatric literature.
  • The incidence of aortic dissection is significantly increased in individuals with TS at all ages, highest during young adult years and in pregnancy.
  • Pediatric patients with dissection have known congenital heart defects, but adults often have aortic valve and arch abnormalities detected only by cardiac MRI (CMR).
  • Cardiovascular anomalies and risk for aortic dissection in TS are strongly linked to a history of fetal lymphedema, evidenced by the presence of neck webbing and shield (broad) chest.

 Sources:
 Mayo Clinic
 National Center for Biotechnology Information (National Institutes of Health)

Moving from Pain to Purpose

Jenn and Bill’s wedding in Ambler, PA April 1998

Quite frankly, writing this was a difficult task. It brought up a lot of painful memories for me. Not a day goes by that I don’t think about Jen. Recovering from something like this is a slow, difficult process, but I can honestly say that both Tyler and I are doing well. When I was contacted about writing this, I really felt this was something I needed to be a part of. I think it is extremely important to raise awareness of how many women have TS and how crucially important it is to properly manage this condition. It is also imperative that the medical community develop a deeper understanding of TS. I have become painfully aware that not enough medical professionals have done the research to enhance their knowledge about this medical condition.

Finally, I want people to know that having TS is not a death sentence. Jen earned a Master’s Degree in microbiology and had a successful career working in budgeting for new drug studies. We had a 21-year marriage and raised a son together. Jen did whatever she wanted to do once she set her mind to it. It was one of her greatest attributes and one of the reasons I still miss her every day. 

TSF is sincerely grateful to Bill for this very personal and heartfelt tribute to his late wife, Jen. It is remarkable how he is moving from pain to purpose–that of informing others with TS about the risks of aortic dissection and the importance of early and regular cardiac care. If even one person can be saved by being prompted to consult with a cardiologist and get a cardiac MRI, we know Jen would be so proud.

Written by Bill, whose late wife, Jennifer, had TS. Edited by Susan Herman, TSF volunteer lead blog editor. 

One Comment on “My Story: Moving from Pain to Purpose

  1. Thank you for sharing your story as I am sure it was very difficult to write! But it is so important that TS girls and women go to doctors who are knowledgable of TS! Hopefully the day will come when all the doctors in the world are educated about TS and how it affects the individuals throughout their lifetime!

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