First, her life was saved; 7 years later, it was her son who needed saving

Blog Josiah Web

At 16, she had brain surgery at Riley; at 23, she gave her newborn son to Dr. John Brown and Dr. Jeremy Herrmann to fix his heart.

Dorie Ann Medler is cuddling with her 4-month-old son while she talks on the phone from her home in southern Illinois.

Her “little man,” as she calls him, is making the adorable noises that babies make when they’re content after a feeding. He coos and chatters in the protective arms of his mother, who is enjoying this peaceful time with her first-born.

This feeling of peace and happiness eluded the young mom in the weeks just before and after her son was born. When she was 32 weeks pregnant, tests revealed her baby had multiple heart defects. The news from their Evansville obstetrician devastated Dorie and her husband, Jed.

In that moment, she said, “We hear ‘heart defects’ and we’re sure our son is going to die.”

Up until then, she had experienced a “perfect pregnancy.”

“We had no idea. He’s just one of the 1 in 100 babies that have congenital heart disease.”

His challenges included hypoplastic left heart syndrome, commonly referred to as half a heart, and dextrocardia, a rare condition in which the heart points toward the right side of the chest instead of the left.

The couple knew they needed specialized care for their son, so Jed started researching heart doctors and landed on Dr. John Brown, the world-renowned heart surgeon at Riley Hospital for Children at IU Health. They knew he was the man they wanted in their son’s corner.

They met with Dr. Brown while Dorie was still pregnant, and she will never forget the confidence he exuded.

“Oh my God, I love that man so much I could just cry,” she said. “He walks in and I feel like I’m talking to a celebrity. He is so sweet. He told us with certainty, ‘Josiah’s heart is very complex. We just need to fix the plumbing.’ ”

And that’s what they set about to do.

Josiah was born full-term Nov. 6 at IU Health Methodist Hospital. It was a difficult labor for Dorie, and doctors eventually opted to do an emergency C-section. Josiah had to be resuscitated three times, she said.

Nurses put him on a ventilator, then brought him over to meet his mom. “I couldn’t touch him, but they put his little cheek right by my face, and I got to kiss him, and that was it.”

The next two weeks would be more challenging than Dorie ever imagined. She slipped into postpartum depression that was compounded by her son’s illness.

“I was 23, a first-time mom. It was terrifying to have to hand your kid to someone and say, ‘please fix him for me.’ I was so scared.”

It didn’t help that she had to remain at Methodist to recover for several days while Josiah was transferred to Riley. Her husband got to hold him first, feed him first. Dorie admits she was angry.

“I know it sounds selfish, but that was really hard for me.”

Dr. Brown and Dr. Jeremy Herrmann operated on Josiah when he was six days old. It was the first in the three-part Norwood procedure to correct his ailing heart. In babies born with hypoplastic left heart syndrome, the left side of the heart can’t effectively pump blood to the body. Without surgery, the defect is fatal, usually within the first few weeks of life.

In the first surgery last November, Drs. Brown and Herrmann worked to reconstruct the aorta and connect it directly to the heart’s lower right ventricle. The next surgery is planned for this summer, with the final operation expected to come when Josiah is about 2.

The days before that first surgery are a blur to Dorie.

“I remember lying on the couch in Josiah’s room when Dr. Brown and Dr. Herrmann came in one day before surgery, and I wouldn’t even talk to them. My husband had to do everything. I wouldn’t eat. I can’t tell you anything except for the sheer panic I felt – I just had a child and my son’s on a medication that is the only thing keeping him alive.”

She credits the nursing staff and social workers at Riley for guiding her through those days. She remembers on the day of the surgery locking herself in a room, crying and feeling like she was losing her mind. A social worker calmed her. After the operation, she recalls Dr. Herrmann walking up to her, putting his hand on her arm and letting her know without words that everything was going to be OK.

“The care that Josiah received was most important to me,” she said. “But the way that the nurses and doctors take care of us too is incredible. You walk in Riley and there’s a different feel. Every person you see is comforting.”

Dorie remembers her first trip outside the hospital when Josiah was still being treated. She rode the elevator down with a nurse she did not know.

“I had big huge tears in my eyes, I was terrified. She did not even know me and she just gave me this random hug, asking ‘Are you OK?’ ”

When Dorie told her she was leaving her son for the first time, the nurse reassured her, promising that Josiah would receive excellent care.

“I have no idea who that nurse was, but that feeling she gave me is the feeling you get when you’re there. You’re scared, you’re petrified, but there’s just so much good there.”

As it happens, this wasn’t Dorie’s first trip to Riley. As a 16-year-old, she underwent brain surgery at the hands of Dr. Jodi Smith to correct a condition called Chiari malformation, in which brain tissue extends into the spinal canal.

Dorie reunited with Dr. Smith during her last visit to Riley with Josiah. “I really wanted her to meet him,” she said. “She’s awesome. I love that woman.” She still remembers how the doctor calmed her before surgery. “I was terrified and she looks at me and holds my hand and said, ‘We love you Dorie, now go to sleep.’ She saved my life.”

And now it was her son’s life that had been saved.

Josiah went home with his parents on Christmas Eve. In the three months since, he has become “a little stud,” his mom says. “He wasn’t the happiest baby at first, but now he is the most beautiful and happiest little boy I’ve ever seen in my life. Right now he’s looking at me, smiling. He belly-laughed the first time the other day.”

Unlike most babies with his condition, he is not on an NG tube for feeding. He sucks down formula like a champ, his mom said. “Ever since birth, he has eaten like a freight train.”

Still, the months between the first and second surgeries to correct his heart are stressful. A fever or cough in one baby can be much more serious for a heart baby.

“It’s very scary. Sometimes you look at your kid and their feet are blue or their lips are blue.”

That’s why Riley’s Department of Pediatric Cardiology home-monitoring program, headed by nurse practitioner Dana Hartman, is critical for peace of mind, Dorie said.

“Dana is the most amazing resource to have. You can text her and say, ‘I’m freaking out, my kid is sweaty.’ If our kids are sick in any way, it’s life-threatening. If it weren’t for the monitoring program, I can’t imagine how even more afraid I’d be – especially being almost four hours away.”

In the end, her time at Riley revealed a strength she didn’t know she had.

“One of the beautiful things about all of this is the friends I’ve made who have kids there. At first you feel like you’re so weak or a sucky mom because you let everyone else poke your kid and you can’t help it. But you meet these other moms who say ‘this is my story’ … I feel like we’re almost super heroes.”

– By Maureen Gilmer, IU Health senior journalist

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