“Being a heart parent is a privilege, but sometimes it feels like a curse”

Patient Stories |

02/11/2021

Heartmomdiaryweb

In honor of Congenital Heart Defect Awareness Week, one young mom pours out her feelings about the ups and downs of raising a heart baby.

By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

Congenital Heart Defect Awareness Week is not just a hashtag to Dorie Medler and her husband, Jed. It is deeply personal.

The young couple became members of an exclusive club two years ago when their first child, Josiah, was born with multiple heart defects. Membership in that club exacts a toll on them they never expected. Countless tears and never-ending fears for the health of their little boy.

But there is also laughter and love. So much love.

Through it all, the southern Illinois parents have put their faith in Riley Hospital for Children, handing their son over to surgeons from the time he was barely a week old.

Josiah was born with dextrocardia, hypoplastic left heart syndrome, pulmonary atresia and transposition of the great arteries.

As renowned Riley heart surgeon Dr. John Brown put it to the couple when he met them before Josiah’s birth: “Your baby has a strong beating heart, but some very bad plumbing that we have to fix.”

Now 2 years old, Josiah is a happy, goofy toddler with big, brown eyes and a melt-your-heart smile. It’s been a long road to get here, and there are many more hurdles to come, but Dorie wanted to share parts of her family’s journey with other heart moms and dads.

So she poured out her emotions in a diary of sorts, which we have linked to here.

“Being a heart parent is a privilege, but sometimes it feels like a curse,” she says. “Every one of us has a different story to tell, and I thought I would share mine to offer encouragement to other parents and families.”

Her life changed forever on Nov. 6, 2018, she said. That was the day her journey as a heart mom began.

“Most moms will tell you that they got to instantly hold their warm soft baby and give it kisses. That wasn’t my situation at all, and it wasn’t for many of the heart moms I have met along our journey, either,” she writes.

Josiah had to be resuscitated after the emergency C-section delivery.

“A WHOLE NEW HEART FULL OF LOVE”

“I waited for them to bring Josiah to me for what felt like an eternity. When he was carried over to me, I was instantly in love. I felt like I grew a whole new heart full of love just for him. I wish that was the case so I could have given him that heart when he needed one.”

Josiah would need his first heart surgery nine days after his birth, and Dorie found herself caught up in feelings of guilt and depression. A Riley social worker helped her through it.

“It sounds ridiculous to some, I’m sure, but sometimes when you’re struggling and you’re in that dark state of mind, you don’t care about anyone or anything,” Dorie writes. “Josiah was in surgery, and the social worker took a walk outside with me. It was freezing cold outside, but I was so numb to everything I wore slippers, sweatpants and a T-shirt. That walk was the first step I took to getting better.”

Josiah got better too, and thanks to strong support from family and the CVICU team, Dorie, Jed and little Josiah were discharged the day before Christmas in 2018. Even though they were four hours away from Riley, the family received constant support from the hospital’s pediatric cardiology home-monitoring program, headed by nurse practitioner Dana Hartman.

Since then, Josiah has had additional, shorter stays at Riley for heart caths, ear tubes and his second open-heart surgery at about 6 months old.

“The hemi-Fontan surgery worked wonders for our son,” Dorie said. “He felt so much better after and had so much more energy. Josiah has been able to enjoy playing and enjoying a surgery-free life for a little while.”

Josiah is due back for a follow-up cardiology appointment at Riley next week, at which time they will discuss when his next heart catheterization will be and from there, determine when the third and final surgery to treat his hypoplastic left heart syndrome will be scheduled.

LEAN ON OTHER HEART PARENTS

The past two years have been an education for Dorie and Jed, but they would go through it all over again for their little boy. Now, they want to help other parents who may be just starting down that road.

“When I was in the hospital giving birth to Josiah, I knew he had heart problems, but there was nothing that prepared me for what we would be going through as a family unit,” Dorie said. “It's messy, and it is extremely hard.”

That said, she regrets not getting more involved with heart parents earlier.

“I say this because you meet so many parents who are or have previously experienced the same things. I truly believe that parents should have some kind of knowledge of what they’re going to be experiencing, or just an outlet where they can read, share their thoughts and experiences, and ask questions.

“The people I have met along Josiah's journey have been some of the most amazing humans I have ever met in my life. We all come together as heart families and help each other through every situation, even if we’ve never met in person. It’s really quite beautiful.”

Dorie wants heart parents to know that it will get better. Lean on one another, talk to other parents, talk to nurses, interact with child life specialists, take a walk, take a shower, she says.

“From one heart parent to another: You can do this!”

Related Doctor

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Dana M. Hartman, NP

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John W. Brown, MD

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