Hope from heartbreak: Mother loses baby son to heart defects

Before he passed away at 12-days-old, Ayden Christopher Boyd suffered cardiac arrest, a stroke, collapsed lung, kidney failure and profuse internal bleeding. The six-pound infant succumbed to complications from severe congenital heart defects, shattering earlier hope that he might survive.

And yet even in death, his short life holds great opportunity to impact others.

Baby Ayden’s mom, Deidre Johnson, of Culpeper, is finding purpose in her pain through the recent establishment of “The Ayden Christopher Foundation” – a charity to aid families affected by congenital heart defects, the most frequently occurring birth defect worldwide and the leading cause of birth defect-related deaths.

“I know Ayden touched a lot of people and I want him to continue touching a lot of people,” said Johnson, 32, of a prayer chain that reached thousands. “As much as it hurts to have to sit here and go through those 12 days again, I have to because I don’t want anybody else to be where I am.”

Ayden’s story

Ayden Christopher was born August 14, 2010 at Washington Hospital Center in Washington, D.C. to parents, Deidre and her partner, Chris Boyd, also of Culpeper. Both Deidre and Chris have children from previous relationships and didn’t plan on Ayden, but welcomed his arrival. Boyd, who has two daughters, was excited to finally have a son. Deidre has a daughter and a son and looked forward to growing their blended family.

Early on in the pregnancy, Deidre knew something was wrong when doctors had her return for multiple sonograms, and they couldn’t get a good view of the baby boy’s heart. A month before Ayden was born, serious heart defects were detected in his little chest. Deidre and Chris were presented with three medical options: terminate the pregnancy, wait for a heart transplant or have Ayden undergo a series of surgeries after birth. She and Chris, hoping for the best, opted for surgery.

Ayden was born at 5:28 a.m. into a world of tubes and wires, uttering a single cry before entering a state of sedation in which he would remain until death. Deidre had just moments with her blue-eyed, black-haired boy before he was whisked away to nearby Children’s National Medical Center, and the care of a cardiac team led by Dr. Mary Donofrio, director of the Fetal Heart Program. At just a couple days old, the infant boy was connected to a heart catheter, a risky procedure that was nonetheless necessary to keep his heart functioning.

Little fire

Ayden was born with one of the most severe heart defects, said Dr. Donofrio – hypoplastic left heart syndrome, a combination of abnormalities in the heart’s main pumping chamber. In Ayden’s case, the syndrome was more complicated than normal in that the connection linking the two sides of the heart was so small that blood could not flow freely. It had to be opened up to allow blood flow through the heart, a procedure done in the cardiac catheter lab.

“It was open a little bit, but it became more obstructed over the course of a couple days,” said Donofrio, describing the catheter procedure as very complicated and difficult. “That was where he initially got even sicker because there was a hole created somewhere in the heart during the catheterization and he had to go immediately on life support.”

Deidre and Chris held out hope.

“They brought him back in a little incubator already hooked up to IVs,” said Johnson. “They told me he was a little fighter – that he was trying to pull out all the wires that they were attaching to him. That’s how we got his name – we knew he was a stubborn little boy.”

Ayden is Gaelic for “little fire” and he certainly showed spirit early on, reacting with a jump to the flash of his parents’ camera. They were certainly not ready to let him go.

“I knew that things weren’t right because we were sitting in the waiting room and I saw people going in and out of the unit and they would look in at me and I didn’t like the looks on their faces,” said Johnson. “It’s the worst roller coaster you’d ever want to ride. Things change within an instant.”

Ayden never stabilized. He kept bleeding – from everywhere.

“What happened in the cath procedure was very difficult and because of that they needed to use the heart and lung machine,” said Dr. Donofrio. “Anytime that happens the body just goes into shock and you can have a lot of bleeding. Your body shuts down and your clotting mechanism doesn’t work very well.”

If Ayden could have been saved, it would have been the team at Children’s that would have done it, she said.

“We did everything to try and save him,” said Donofrio. “It just breaks my heart. When you develop these clotting disorders, because of the shock of the cath procedure, there is no recovery.”

Children with defects who are stable enough to undergo heart surgery have an 85 percent chance of survival, she said, adding that abnormalities can be detected in the fetal stage, and preparations made.

Deidre, who grew up in neighboring Fauquier County, talks in slow sentences about the days before, during and after Ayden’s birth, like she almost doesn’t believe what they’ve endured. She breaks down often as she recounts his story, clearly not over the loss and not willing to let Ayden be forgotten.

Day is done

At 12-days-old, Deidre and Chris made the decision to allow Ayden to be disconnected from life support. It was a heart-wrenching decision, but one that had to be made upon realizing nothing more could be done.

“We were told it would continue to get worse and worse and worse with him eventually going blue,” Deidre said. “We could not fathom doing that to him. You don’t want to see your child suffer. Rather than being selfish and wanting to hang on, we decided late that evening that we would do it then. That’s what we did and he passed away at 3:35 a.m. on August 26.”

Like any mother would, she pushed for second and third opinions before allowing him to rest, but there was no saving Ayden. His heart was too damaged – the bleeding too profuse.

In the aftermath, Deidre couldn’t bear to bury Ayden because she wanted to be able to take him with her if she ever moved from Culpeper. He was cremated, and she carries a piece of him around her neck in a gold cremation locket. Deidre also wears a Mended Little Hearts membership pin on her collar – proof that there is support out there.

It was a tough time, said Boyd, an electrician originally from Fairfax.

“I definitely wouldn’t wish it on my worst enemy,” he said. “What we had to go through was a big struggle and a lot of ups and downs that we were not ready for.”

Since her son’s death, Deidre has become a veritable expert on congenital heart defects. She obtained all of Ayden’s hospital records – more than 1,000 pages – and started reaching out to a community of others like her. Almost immediately, Deidre decided she wanted to devote herself full-time to helping other families and raising awareness about heart defects.

The Ayden Christopher Foundation

Understandably, it took a little while for Deidre to get her feet back underneath her.

“I had gotten to the point where I couldn’t get up in the morning. I am a very extroverted person and I stopped being that way. I didn’t want to see people,” she said.

Johnson quit her job at Culpeper Wood Preservers, and it drove a wedge in her relationship with Chris. But Johnson moved forward, empty arms and all: “I looked at Chris and said I think we need to start a charity for him because nobody should have to do this, and hopefully because of him nobody will have to.”

Thus was born the Ayden Christopher Foundation – a charity focused on children with the most severe heart defects, like Ayden. The organization has its own Facebook page and is on its way to achieving nonprofit status. Deidre has been busy promoting this week’s Congenital Heart Defect Awareness Week and is actively seeking sponsors. Culpeper County Library has a display set up in the lobby about the awareness week and Tropical Smoothie will donate 20 percent of all sales to the Foundation through Friday – just mention congenital heart defects or Ayden.

“Doing this gives me meaning behind his death,” said Deidre. “Helping others is helping me heal.”

According to Donofrio, there is no known cause for congenital heart defects. Some are genetic, she said, while others can be caused by environmental factors, like pollutants. What is known is that the defects form very early on in fetal development, sometimes before a mother even knows she is pregnant, Donofrio said. They are the most common birth defects, affecting one in every 100 babies though not all require surgery, she said.

Research on the topic is ongoing at Children’s, the top medical center in the region for treatment of heart defects. Last year, the hospital did 600 heart procedures, according to Donofrio.

“Everybody knows somebody who has been impacted by congenital heart defects,” she said, expressing frustration at the lack of concrete reasons for it. “For most of our families we have one identifiable reason – what we are left with is bad luck.”

The Ayden Christopher Foundation is a nonprofit group aimed at raising awareness and support of congenital heart defects, the most common birth defect affecting about 35,000 infants in the U.S. annually. A congenital heart defect is an abnormality in any part of the heart that is present at birth; they originate in the early weeks of pregnancy when the heart is forming. In most cases, the cause of heart defects is unknown. Although some babies will be diagnosed at birth, sometimes the diagnosis is not made until days, weeks, months or even years after. Funds donated to the Ayden Christopher Foundation, created by Deidre Johnson of Culpeper, will benefit other families living with heart defects. Mail contributions to: The Ayden Christopher Boyd Memorial Fund at Hope Community Church, 121 E. Culpeper St. Culpeper, Va. 22701. Tropical Smoothie of Culpeper will donate 20 percent of all proceeds through Friday to the Foundation – just mention congenital heart defects or the Ayden Christopher Foundation.