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.
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.
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.
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.
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.