Leo Overcomes a Major Scare

Leo overcomes a major scare

Ashley Nelson and her husband Jason Phipps of Madison were settling in late on a September night in their birthing suite at UnityPoint Health – Meriter, hoping to get some sleep. About 19 hours earlier, Ashley had given birth to a beautiful baby boy, Leo, the couple’s second child. All seemed fine, and the family was planning to go home the next morning. 

Sara Storm, RN, a postpartum nurse, was nearing the end of her shift when she noticed that Leo appeared greyish-blue – a worrisome sign that suggested his oxygen level was insufficient.

Normal blood oxygenation is in the 90s, but Sara was stunned after seeing that Leo’s oxygenation level was only in the high 30s. To double check, Sara moved Leo to another machine, which confirmed that Leo was in real trouble.

Suddenly, Jason recalls, the room quickly turned into a scene reminiscent of the TV series “ER.”

“Lots of people were running in and things were getting more frantic. We were scared, wondering what in the world is going on.”

Physicians and nurses from the Neonatal Intensive Care Unit (NICU) examined Leo before quickly bringing him up to the NICU, where he was intubated. One of the first people to meet Jason and Ashley was UW Health Pediatric Cardiologist Amy Peterson, MD.

“With his oxygen levels so low,” says Dr. Peterson, “I suspected Leo was either having a lung problem or a heart problem. His breathing had been fine, so we zeroed in on the heart right away. Our hunch, which was confirmed with an echocardiogram, was that Leo had a rare complex heart defect called Transposition of the Great Arteries.”

Leo had a rare complex heart defect called Transposition of the Great Arteries

Blood was not circulating properly

Babies like Leo are born with a complete reversal of the major heart valves that carry blood to the lungs and the body. Instead of blood flowing normally in one continuous circuit throughout the body, Leo had two parallel circuits of blood, both flowing to the wrong place. His red, oxygen-rich blood was flowing only to the lungs, while, his blue, oxygen-poor blood was flowing to the rest of the body.

This highly abnormal situation was gradually depriving Leo of enough oxygen to survive. Quickly, he was started on a medication called PGE and transferred to American Family Children’s Hospital by CHETA, a critical care vehicle that specializes in transporting children.

Sara Storm, the nurse who first noticed Leo’s abnormal appearance, spent just a few hours caring for Leo, but the time she spent tending to him turned out to be as precious as the little baby boy himself.

“He was soon out of my hands, but he was in my heart ever since that moment,” Sara says.

Open heart surgery needed

Survival for Leo meant he would soon require a complex open-heart surgery known as an arterial switch operation. First, however, Leo would undergo a balloon atrial septostomy procedure to buy him a few days of time to grow and learn how to eat. Performed by UW Health pediatric interventional cardiologist Luke Lamers, MD, the septostomy enlarges the hole between the heart’s upper chambers, allowing the “red” and “blue” blood to mix, sending more oxygen-rich blood to the body.

“Leo started doing much better after the septostomy,” says pediatric cardiothoracic nurse practitioner Kari Nelson, APNP. “He was able to learn how to feed and just be a baby, which would pay off after surgery.”

On day seven of life – October 1, 2018 — Leo was taken to the operating room at American Family Children’s Hospital. There, UW Health pediatric cardiothoracic surgeon Petros Anagnostopoulos, MD, (known as “Dr. A,”) performed the intricate 7-hour surgery that went very smoothly.

“Dr. A. did a fantastic surgical repair, which set Leo up for great post-operative care in the Pediatric Intensive Care Unit (PICU),” says Kari. “Leo started breast feeding on the fifth day after surgery, which is remarkable, and was ready to go home on the ninth day, which is also amazing. It truly was a great team effort across both hospitals.”

Leo and his big sister Madeline
Leo and his big sister Madeline

Today, Leo is doing very well. He will be cared for by a cardiologist for the rest of his life but should not have any significant restrictions throughout his lifetime.

Jason and Ashley, who also have a 3-year-old daughter, Madeline, are incredibly relieved that their new son is healthy.

“We are so fortunate to have these facilities right here in our backyard,” says Jason. We could not be happier with the care that Leo received.”

One comment

  • I am so glad Leo is doing well. Our youngest was also born with this congenital birth deft had all of the same procedures as Leo did. That was 181/2 years ago for our journey with our youngest. Our daughter will celebrate her 19th birthday in April