'The happiest baby in the world': Infant battles back from rare spinal disease

Chart Riggall, Marietta Daily Journal, Ga.
·3 min read

Feb. 18—Caroline was born last summer to her parents Jeff and Marlena Lloyd as the very portrait of a happy, robust baby.

"She was full term, healthy, very strong ... nine pounds at birth and an extremely healthy baby," Jeff Lloyd told the MDJ. And that was how Caroline lived the first four and a half months of her life, until "a nightmare situation" descended on the Lloyd family last October.

"We got Caroline up, got her ready for daycare, and then dropped her off," said Marlena Lloyd, a teacher at Lassiter High School. "And we got a call saying that she wasn't really acting herself."

The situation escalated quickly, as Caroline soon was limp and had trouble moving her limbs. Within hours, she was rushed to Scottish Rite Children's Hospital, where she has been ever since.

Caroline was diagnosed with a rare neurological condition, transverse myelitis, an inflammation of her spinal cord. In the early days in the hospital, as the inflammation spread, her condition became more and more dangerous.

"We're in the ICU room on the couch staring at her and ... her heart rate and oxygen levels were plummeting rapidly. They basically hit the alarm where the entire floor is running to her room," Jeff Lloyd said.

Caroline spent weeks on a ventilator, which required a tracheotomy after her upper airway became blocked. But since those frantic early days in October, her condition has slowly, if not always surely, improved.

Beyond the obvious difficulties of having an infant battle through a near-fatal neurological condition, the Lloyds have been tasked with raising their two other daughters, Clara and Cate, holding down their respective jobs, and trying to juggle all this as a deadly pandemic continues to rage.

Marlena Lloyd said the long days and nights at Scottish Rite have been "very isolating" at times.

"Not having the opportunity to have people has been pretty taxing," she said. "I've been at the hospital pretty much all the time ... under normal circumstances we would have visitors, family would be able to see her, but now this hospital kind of becomes your own little world."

Now, a GoFundMe page organized on behalf of the Lloyd family has raised nearly $30,000 as of Feb. 17. Marlena Lloyd called the outpouring of support "overwhelming." For her husband, the contributions have been hard to believe, and at times, uncomfortable for the family to accept.

"Under no circumstances would I or Marlena ever ask for any kind of help, even during a time like this," he said. "I guess we just had to kind of release and allow people to, I guess, to serve in that kind of capacity, the way that they wanted to."

Caroline is now set to return to her Woodstock home on March 1st, but has a long road ahead to her recovery, whatever that may look like. Her speech development may be delayed, and she may require a wheelchair or assistance walking as she grows. But doctors say in all likelihood, Caroline will be able to lead an independent life.

The Lloyds have other reasons to be hopeful. Thanks to some successful lobbying from Caroline's doctors, the family's insurance company has approved coverage for three months of at-home nursing, with the hope that they can secure an additional three months through Medicaid, helping to cover what would otherwise be a huge expense.

"(The doctors) just went to bat for us," Jeff Lloyd said. "Now we can see the light at the end of the tunnel, for sure. She's the happiest baby in the world. Going through, honestly, kind of a living hell, she's still the happiest baby. She's remarkable. She's a fighter."

Readers wishing to support the Lloyd family can find their GoFundMe page at https://www.gofundme.com/f/9j24w-support-the-lloyd-family.