Heart surgery make baby's 1st photos a family treasure

In the course of one year, Erin and Rob Marshall moved to Cincinnati, got engaged, got married and got pregnant.

It was all happening so fast – maybe that's why Rob decided he would take a photo every day of Erin's pregnancy. The images would be a gift for their child, something small to show him later about how excited they were for him to arrive and how they learned to love their new city.

But this fun idea would become something far larger because every good story has conflict and drama. They didn't know it when they started, but Erin's pregnancy would have plenty of both.

The first photo was of the positive home-pregnancy test. Then restaurants and Reds games and yoga. A crib was made, walls were painted and the winter grew cold.

Then, at 28 weeks, March 18, during an ultrasound, something didn't look right with the baby's heart. The technician said it was probably just a bad image of a squiggly baby. March 19, they went for a "level 2" ultrasound that would give a much clearer image.

The doctor said the baby had hypoplastic left heart syndrome, a complex and rare heart defect that meant only two chambers were working in his heart instead of four.

That doctor told Erin, 33, to try to carry the baby to term, and that the baby might make it through the pregnancy. Might make it.

"Heartbreaking. We left the hospital and Erin began crying as soon as she reached our car," said Rob, 36, "It was the first and only time I saw her cry following the diagnosis. When we got home, it felt like someone had died."

When the Marshalls went online and looked for information, they found almost nothing, and even less of it was good. They were desperate for news, for options, for hope, but all they found were words like rare, complex and dire.

For that one day, the Marshalls sat in their misery and fear. Their new city, their Downtown apartment, her job at Procter & Gamble – it all felt meaningless. This pregnancy would fail, this baby would not make it. It was all going away.

But they only gave themselves one day to feel that way.

Rob started taking photos again. They felt like stopping would feel like giving up, or giving in. They decided that no matter what happened, the next time somebody went online to search "hypoplastic left heart syndrome" that person should be able to find a story with real people. Hopefully real people with a healthy baby.

At Cincinnati Children's Hospital Medical Center, the day after the diagnosis, the Marshalls learned much more about their son's condition.

Hypolastic left heart syndrome means a baby's left ventricle is underdeveloped and too small; the mitral valve is not formed or is too small; and the aortic valve is not right either.

Each of those is a bad deal and the Marshall's baby had all of them. Once he was born, the left side of the baby's heart would be unable to send enough blood to the body. The right ventricle can support the circulation to both the lungs and the body for a while, but this extra workload eventually causes the right side of the heart to fail.

This is all bad news, but the Marshalls also learned they would have two options. The first was that their son, shortly after birth, could begin a series of three open-heart surgeries to try to reconstruct his heart. This often works, but the child is never perfectly well.

The second option was a long shot, and risky. In this operation, called aortic arch advancement, the surgeon would focus on the aorta, which was far too small in one section.

The surgeon would cut out the narrow part, pull the two ends together and stitch. The hope is that maybe, just maybe, this could increase blood flow to the heart and stimulate the two chambers that were not working or growing properly.

The Marshalls went home and tried to live their lives. They took photos every day of a pregnancy that was suddenly complicated. Erin is smiling in each photo, each snippet of video. "I thought it would help the baby for me to be positive," she said.

She smiled through a baby shower, the Opening Day parade, hot dogs at Senate and donuts at Holtman's. This was a woman committed to a happy pregnancy. And she made it all the way to 39 weeks.

On May 28, Alexander Marshall was born and placed in a pod-looking device and sent to Cincinnati Children's. Rob went with the baby. Erin stayed at Good Samaritan Hospital with her sister and watched them leave.

Was that difficult? Erin looks at the table, pauses for a moment and finally says, "Yes."

Over the next week, the photos continued. Alexander with tubes, then Erin holding Alexander, then Alexander holding Rob's finger.

At Children's, the heart committee looked at images, considered the studies and spoke of risk and possible outcomes. They decided to recommend option two, the aortic arch advancement. The Marshalls agreed.

"It was really weird to be glad your son is having open-heart surgery when he is 8 days old, but we were glad," Erin said.

On June 5, Dr. David Morales, chief of cardiovascular surgery at Cincinnati Children's, cut open Alex's chest. He and a team of doctors and nurses got their first real look at Alexander's heart and decided the aortic arch advancement might actually work.

"Those seven hours were excruciating," Rob said.

"We felt so bad for him, he was just a baby and he was having heart surgery," Erin said.

Dr. Morales clamped, cut, stretched and stitched the aorta and waited to see the blood flow faster. It did, and better yet, the chambers began to function better, and then better again.

After seven hours of surgery and three hours of stabilization, Alexander's heart began to operate fairly well. The operation was a success.

The next images are of Alexander with a scar running down his chest, and Erin holding her baby again. And then taking him home. Alexander could still develop scar tissue, and he is still on medicine; but his prognosis gets better every day. His weight is normal, his height is normal and all four chambers are functioning properly.

The Marshalls know how lucky they are, and they are happy with their decision to keep taking photos and that they stuck with their decision to make their video.

"Now we can maybe help people down the line," Erin said.

"I've heard from people who have the same diagnosis," Rob said. "They said they didn't even know these outcomes were possible. Yes, that is gratifying."

Dr. Morales is glad to see the video as well. "I'm here for innovation and education," he said. "The goal is to help your patients, of course. But a bigger goal is to help people you may never see."

Thursday, Erin returned to work. Rob, with an MBA from Georgetown University, will stay home for a while and look for work. And they will both celebrate their son – and sometimes watch the video.

The last image on the tape is perhaps the best. It is from June 11, and Alexander is lying in his crib at home for the very first time. He is pink-cheeked and cooing. He is wearing a blue onesie with a green dinosaur on the front.

"Welcome home Alexander," Rob says. "We've been waiting a long time for you. We love you very much."