Tag Archives: congenital heart defects

Healing Hearts And Minds: Tracy Livecchi’s Crusade

Tracy Livecchi was born with a congenital heart ailment.

She’s one of 2.4 million Americans living with that condition. It’s the number one cause of infant mortality, and is 50 times more prevalent than childhood cancer.

A Westport resident since 2009, Livecchi has raised 2 children here while building a thriving practice as a psychotherapist.

She treats the usual issues — depression, anxiety, stress — but has developed a specialty: patients with cardiac disease, and other chronic illnesses.

Tracy Livecchi

Despite their prevalence, there are not a lot of resources for people with those ailments. And though medical technology has advanced rapidly, few professionals are addressing the mental health aspects of long-term conditions.

“I’ve been in plenty of hospitals,” Livecchi says. “No one has ever asked me how I’m doing emotionally.”

As a mental health consultant for the Adult Congenital Heart Association, she is in a position to help.

So was Liza Morton, a Scottish therapist who also was born with a heart condition. When Livecchi learned they were both writing books about patients with congenital diseases, they compared outlines.

They were nearly identical.

The women decided to collaborate. The result is “Healing Hearts and Minds: A Holistic Approach to Coping Well with Congenital Heart Disease.” Livechhi calls it the first book in the world to focus on the emotional and psychological experiences of those patients.

Fifty percent are at risk of developing anxiety, depression or PTSD, Livecchi says. The book includes information on prevention, recognizing the signs, when and how to get help, and grounding exercises, breathing techniques and other relaxation methods.

There’s a chapter aimed at family members, and another one for healthcare providers, on the importance of psychological care.

“Most people know someone with congenital heart disease. But the signs aren’t obvious,” Livecchi notes. “You may not see their physical scars.”

Even many cardiologists have not been trained to treat congenital heart disease medically, let alone psychologically, she adds.

“There’s a big difference between congenital heart disease and coronary artery disease,” she says. “It can be really isolating to feel like you’re the only one with it.”

“Healing Hearts and Minds” was published in January. It has garnered plenty of attention in the UK, but less in the US. Patients and family members who have seen it certainly appreciate it, says Livecchi.

It will be in the local spotlight April 19. The author will speak at the Westport Library (7 p.m.), as part of “Saugatuck Scribes: Healing and Caregiving.” Click here for details.

Another big appearance follows, On July 1, Livecchi will throw out the first pitch at Busch Stadium, when the St. Louis Cardinals host the New York Yankees.

“I’ll have to start practicing,” Livecchi says.

It is certainly a “heart-felt” honor.

 

“Heart Moms” Pay A Bummer Bear Forward

Congenital heart defects (CHDs) occur in 1 out of every 100 births. The impact on babies — and their families — is profound.

Westporter Britt Sheiber is the mother of twin boys, Evan and James. They turn 1 on April 27 — her birthday.

It’s been quite a year. During Britt’s pregnancy, a 16-week ultrasound revealed Evan’s CHD. His type — “half a heart” — is extremely rare.

The Sheibers searched for the best treatment. They found it at Boston Children’s Hospital.

Evan was in the NICU for a few weeks. Britt drove to Westport every other day for a few hours, to see James and her 2 older children.

Finally, Evan came home. But he caught a cold, and ended up in the Yale-New Haven Children’s Hospital ICU.

A Bummer Bear.

That’s where he received a “Bummer Bear.” Passed on by the (coincidentally) Westport mother of another boy with CHD, it’s a special teddy bear. His zipper — representing the surgery scar — opens to reveal a tiny red heart, with little white stitches.

The mom sent an inspirational letter too.

The gifts gave Britt hope, and made her realize she was not alone. They helped her through Evan’s first open heart surgery — along with calls and texts from Ali Marcus.

Ali is another Westport mom whose son West was born with CHD. The women had  been introduced by mutual friends right before Britt gave birth to Evan, as West was preparing for his own surgery.

After Britt received her Bummer Bear for Evan, she paid it forward by sending one to Ali for West.

West Marcus loves his Bummer Bear.

Not long ago, the women heard about Fatemeh Reshad. The 4-month-old Iranian child — born with a congenital heart defect — was flying with her parents to Oregon for a life-saving procedure.

But when President Trump’s executive order banned travel from 7 countries, they had to cancel the surgery.

The women were stunned. As “heart moms,” they would go to the ends of the earth to get their children the best treatment possible. They knew Fatemeh’s mother was doing the same.

Britt and Ali posted Fatemeh’s story on social media. They reached out to their contacts at Yale-New Haven and Boston Children’s for help. After Governor Andrew Cuomo and the International Refugee Assistance Project intervened, the federal government allowed Fatemeh and her family into the US.

The women quickly sent Fatemeh a Bummer Bear, plus other gifts: a personalized pillow, cheerful button-up onesies, a pacifier/lovey for her chest, and cozy socks for Fatemeh’s mom. They added encouraging letters too.

Bummer Bear and assorted donations for Fatemeh, thanks to Westport’s “heart moms.”

Today, Britt monitors Evan’s oxygen numbers daily. They see his Boston cardiologist every few months. Evan will need another open heart surgery in a couple of years.

Britt takes care of him — and many others. Realizing the lack of awareness (and funds) for children with CHD, she founded Evan’s Heart Fund. All money goes to single ventricle research. This winter at JoyRide, she raised $27,000. Another fundraiser is in the works.

James (left) and Evan Sheiber today.

As for West: He’s a happy 1-year-old, chasing his 3 big brothers and 1 big sister. He too must be monitored every day for the rest of his life.

“Our family has been changed forever by this,” Ali says. “We are grateful for our hearts every day. What an incredible organ!”

So she, Britt and other moms stand ready to help the next heart mom, and the one after that.

It’s the heartfelt thing to do.