Parents Reflect On Death Of Child With Rare Heart Disease

SHEPHERDSTOWN, W.Va. (AP) — Kristen Graves and her family traveled back home, from Shepherdstown to Christiansburg, Virginia, with love and a little bit of sadness in their hearts.

They returned to their former hometown on June 15, having lived in Shepherdstown about a year, to honor their beloved daughter and sister, Brooklyn. June 15 would have been her 10th birthday.

“The boys all took balloons, messages and words of inspiration, sending them to Heaven,” Graves said.

Brooklyn was born June 15, 2012, and passed on Jan. 7, 2013, having been born with a congenital heart defect known as Tetralogy of Fallot. Graves continues to share her daughter’s memory, advocate for research and support the American Heart Association, an organization that helped tremendously through Brooklyn’s battle.

The trip of a little more than three hours is one Graves, her husband and their three sons make yearly to honor Brooklyn, but remembrance is much more than a once-a-year moment.

“We talk about Brooklyn a lot. We have pictures of her. We celebrate her life. We celebrate her birthday,” Graves said. “It’s normal, as normal as it can be, to the kids. They grew up with stories of their sister, and they love their sister. We were blessed a year and a half later after Brooklyn passed with twin boys."

While honoring Brooklyn comes with smiles and some tears, Graves and her husband will never forget the hardships that led them to AHA and the strength the family now has.

“‘We need to send you to have a fetal echocardiogram right away’ — it’s definitely not the words, as a first-time mom at 24 weeks pregnant, that you want to hear,” she said. “March 28 will live in my heart forever. That’s the day we learned our daughter, Brooklyn, had a congenital heart disease, known as Tetraology of Fallot.”

She recalled going numb, hearing only bits and pieces of what the doctor was saying and asking why this was happening.

The parents-to-be were put in contact with numerous organizations in the following weeks and told to stay off the internet.

“I did just that (went online),” Graves laughed, “and that’s when I came across the American Heart Association website. There, I was able to find so much valuable information but more importantly, some amazing people who were going through similar struggles.”

She called the AHA outreach and online forums a lifeline as she got answers and read stories of inspiration and hope.

Brooklyn’s birth was a special moment but one that was quickly followed by heartbreak.

“As a mom, the first thing you want to do is you want to grab your baby, and you want to hold them. I’ll never forget the moment she was born,” Graves said in a video shared by AHA on Youtube.

She was able to give her daughter a kiss before Brooklyn was taken away, the first true time she laid eyes on her baby. Brooklyn had her first surgery at 3 days old.

Amid the tears, there were those special moments that will last a lifetime in the hearts of the Graves family, a smile coming across the mother’s face as she recalled some of her favorite memories.

“Brooklyn loved to hold her dad’s fingers,” she said. “There wasn’t a night that went by that he wasn’t there, allowing Brooklyn to squeeze his finger. We stayed until she let go.”

That was their signal that the baby was asleep.

Two weeks before Christmas 2012, Brooklyn made it home after spending six months in the hospital.

“That was the best Christmas of my life,” Graves shared in the video.

Now, reflecting on what the last 10 years held, Graves’ memories of her daughter remain strong as she realizes the reach the tiny little Brooklyn had.

“Brooklyn, she was the bravest, sweetest little girl,” Graves said. “She underwent so many operations in her short life, but I think the best memory of Brooklyn is that she brought more people together in her short life than most of us do in a lifetime. I remember her funeral; there were over 300 people. There was standing room only. The love and support from our community, our friends, it was amazing. Brooklyn touched more people than most of us do in a lifetime. She’s a special little girl.”