He May Have Been Born a 'Blueberry Muffin,' But Today He's Their Miracle Baby

Levi Santamaria turned 1 today.

If not for the congregation of Middletown’s Fellowship Church, Levi’s mother believes this day may never have come. “I had 250 people standing up with their arms stretched toward Levi. They were just praying so hard for this baby,” said CariAnne Santamaria, a longtime member of the 1002 Saybrook Road church.

Levi was born with blue spots on his body and a lesion on his liver, results of the blood disease Langarhans Cell Histiocytosis.

According to the Children's Hospital Boston, is a rare disorder that occurs when a child has too many of a certain type of white blood cell. Chances of having it are one in 200,000.

CariAnne remembers, vividly, the doctor explaining the seriousness of Levi’s condition to her and her husband, Shane. “He said, 'this is a very rare disorder. It’s just like cancer. It can spread to all the organs. It can get into the bone marrow. He can be in extreme pain. He can be a very, very sick little boy.'”

“We were just blown away,” CariAnne said.

The couple's initial instinct was to seek guidance from above. “We’re a strong Christian family,” CariAnne said. “And the first thing we did was we went to the Lord with prayer. That’s never our last resort; it’s always our first option.”

Fast-forward one year and Levi is thriving — and spotless.

The Santamarias credit their faith for the little guy’s turnaround. “Those who come to the Lord in prayer, they get what they ask for,” CariAnne said. “When you say you have faith in God, you really need to have it. You can’t just say it. Walking it and living it are very different than just speaking it.”

Before Levi came along, the Santamarias, of Haddam, thought their family was complete. The couple already had a boy, Christian, now 12, and a girl, Faith, 3, at home.

“He was a miracle child,” CariAnne said of Levi.

But the pregnancy was not smooth. “It was a comedy from day one,” CariAnne said, pointing out her extreme morning sickness, and the broken ribs she sustained due to excessive coughing.

CariAnne had no way of knowing, however, the twists and turns that awaited her and her family.

After a planned Cesarean section at Hartford Hospital, CariAnne said the room went silent as Levi emerged. “You could hear a pin drop.”

The first thing she recalls hearing was an ominous question: Were you exposed to any types of diseases or contagious illnesses while you were pregnant?

CariAnne, who had yet to see Levi at this point, remembered that her 9-year-old nephew had had Fifth disease, a common viral illness.

Upon hearing that, the doctors pulled on their surgical masks and extra gear. “I’m thinking ‘What, did I have some alien baby or something?,’” said CariAnne.

Moments later, when she laid eyes on her son, CariAnne was relieved to see that he was of average size, but covered in spots. “I laughed out loud on the table,” she said. “I said ‘he looks like a blueberry muffin.’ He was just the cutest little thing.”

It wasn’t until Levi was whisked out of the room in an incubator, headed to the neonatal intensive care unit, that CariAnne understood the seriousness of the situation. “I could feel my heart racing.”

As it turned out, CariAnne’s nephew had nothing to do with Levi’s condition. It was LCH.

Levi and his parents left the hospital six days after his birth with a two-page list of follow-up appointments to attend.

Levi’s spots quickly began to fade, but in late September, it was discovered that the lesion on his liver had grown. The hematologist urged CariAnne and Shane to allow their son to receive chemotherapy.

After seeking other opinions, the Santamarias determined the best course of action would be to wait and see if the lesion grew much more before considering chemotherapy.

Knowing the Santamarias' strong faith, Levi’s doctor was concerned the family would bypass science and medicine for prayer alone.

“He said, ‘I don’t want you to be the kind of parents that go home and light a candle and pray, and never come back here again,’” CariAnne recalled. “I said ‘that’s not how we are.’ I said ‘the Lord put us here, and put you in our life for a reason. That’s because you guys are the best of the best.’”

Not long after that meeting, Levi awoke up in the middle of the night crying uncontrollably. Fearing Levi’s condition may have worsened, CariAnne and Shane rushed him to Connecticut Children’s Medical Center.

X-rays were performed and an ultrasound was taken. Thankfully, the only thing unusual discovered was that the lesion on Levi’s liver had almost completely disappeared.

“We were looking at each other, stunned,” CariAnne said. “Being the wise guy, I said, ‘I knew it all the time. I knew he was going to be fine.’”

Levi’s last appointment with hematology was in May. That’s when the Santamarias were told the lesion is no longer “active,” meaning there is no blood flow to it. All that remains of the lesion is scar tissue.

CariAnne is pleased to report that Levi’s medical records now read: "history of LCH."

Fellowship Church will host a birthday party for Levi on Sunday. The guest list has topped 200.

“It’s not so much about decorations and balloons and themes,” CariAnne said of Levi’s birthday festivities. “It’s more about the milestone of him being alive.”

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