Prayers answered: 4-year-old survives despite grim prognosis

Sarah Lehman

When 4-year-old Olivia Shafer of Uhrichsville runs, plays and chatters, she is the picture of a beautiful, healthy child.

An observer would never guess that she has a rare medical condition and in the course of her first year of life, she technically died five times. Nor would one suspect that at birth, she only weighed a pound and could fit in the palm of a hand.

Olivia is one of only two documented cases in the United States with a hemangioma (strawberry birthmark) intertwined with her larynx muscle. 

A hemangioma, which is made up of tufts of extra blood vessels, is the most commonly occurring type of benign tumor found in infants. These benign tumors peak in size at 12 to 18 months of age. By the time a child is 10, most disappear.

“What makes Olivia’s case unusual is that hers is wrapped around her larynx,” said her mother, Nicole Rader Shafer.

In the fall of 2005, Nicole and her husband, Ian Shafer, were enjoying a smooth pregnancy. They, along with their boys Aaron and Nicholas, were eagerly anticipating the arrival of a new family member in January. But in October, the uneventful pregnancy took a drastic turn. 

“I had a wonderful pregnancy, but out of nowhere, I went into early labor. The day after I turned six months pregnant, I gave birth to our daughter at Aultman Hospital and soon she was hurried off to the NICU (neonatal intensive care unit). She was only 27 weeks,” Rader Shafer said.

Doctors gave little hope for Olivia’s survival. 

“Her first two hours of life cost $92,000, and the doctors said that babies this little don’t make it,” her mother said.

The family wasn’t sure she would survive the first night.

“We were so scared. We knew that the only thing that could help her was prayer,” Rader Shafer said. “So we prayed, and our church – the First Assembly of God in New Philadelphia – has an awesome prayer chain, and they prayed.”

But it was the prayers of an NICU nurse that really surprised the family. Soon after Olivia’s birth, her maternal grandparents went to the NICU to see their granddaughter. 

“As soon as my parents walked in, they saw a nurse with her hands on Olivia praying,” Rader Shafer said. “My parents just stood there and watched as the nurse prayed for her for at least three minutes straight.” 

When the nurse, who introduced herself as Melanie, finished praying, she told the family that God gave her the job to pray for all the babies. By this time Ian Shafer had wheeled his wife into the NICU, and they, too, were able to meet Melanie.

As weeks went by, the family continued to look for Melanie. They asked for her by name and description; yet, the other nurses always seemed puzzled.

“Finally a doctor told us that there never had been a Melanie working there, and he could not think of anyone who even matched her description,” Rader Shafer said. “Olivia was at Aultman two months, and we never saw Melanie again. That’s when we realized that this nurse was Olivia’s angel.

“We felt like through all the prayers God kept her alive.”

So despite the odds, Olivia was ready to go home in December. However, as she was drinking formula before leaving the hospital, she aspirated some and stopped breathing. 

“She died for five minutes,” her mother said. “She was blue, wasn’t breathing, and they told us that if she did make it she would be brain dead.”

But Olivia survived, and a few days later, she was able to go home.

However, over the course of the next few months she was in and out of hospitals, with continued respiratory problems. She was resuscitated multiple times, transported by helicopter to Akron Children’s Hospital twice and still, the Shafers felt like they didn’t have answers.

“They diagnosed her with BPD (bronchopulmonary dysplasia) which is kind of a catch-all term for breathing problems, but it didn’t really give us answers. So, when they tried to dismiss us the second time, I said that we weren’t going anywhere until we had more answers. I couldn’t keep watching her stop breathing,” Rader Shafer said.

Akron Children’s kept Olivia and proceeded with more tests. When medical staff used a scope through her nose, they were able to see the hemangioma. 

“It was the size of a golf ball and wrapped around her larynx,” her mother said. “You have to realize that Olivia only weighed five pounds at the time.”

The family was relieved to finally have some answers. During the next few years Olivia had several surgeries to remove as much of the tumor as possible.

“They couldn’t take it all because that would mean removing her voice box,” Rader Shafer said. “The good news is that the tumor is shrinking now. They think that by the time she is a teen it will be gone.”

These days Olivia loves to play, do schoolwork and recite Scripture.

Her favorite verse is Philippians 4:13 “I can do everything through Him who gives me strength.”

That, according to Rader Shafer, is the perfect description of Olivia.

About hemangioma

A hemangioma of infancy is a benign self-involuting tumor of endothelial cells (the cells that line blood vessels). In most cases it appears during the first days or weeks of life and will have resolved at the latest by age 10. In infancy, it is the most common tumor.

The cause of hemangioma is currently unknown; however, several studies have suggested estrogen may play a role.

If a hemangioma develops in the larynx, breathing can be compromised. A hemangioma can grow and block one of the eyes. Very rarely, extremely large hemangiomas can cause high-output heart failure because of the amount of blood that must be pumped to excess blood vessels. Lesions adjacent to bone also can cause erosion of the bone.

The Times-Reporter (New Philadelphia, Ohio)