Mother Describes Challenges in Getting Treatment for Newborn with Lyme Disease

A newborn with Lyme disease can present with subtle symptoms that are easy to overlook. In a published case report, a mother described the frightening experience of seeking treatment for her infant after noticing a tick and early signs of illness.

Her account highlights the medical, emotional, and logistical challenges families may face when trying to obtain timely care for Lyme disease symptoms in infants.

Key Point: Early symptoms of Lyme disease in infants may include excessive sleepiness, rash, and difficulty arousing the child. Prompt recognition and treatment are essential.

Early Symptoms in the Newborn

The mother first noticed a tick on her newborn daughter. “Three days later, she was very sleepy and hard to rouse,” the mother wrote.

The infant developed a red rash, although it did not resemble the classic bull’s-eye rash often associated with Lyme disease.

She was hospitalized and treated with intravenous antibiotics delivered through a PICC (peripherally inserted central catheter) line.

Hospital Challenges During COVID-19

The mother described sleeping in a small hospital bed beside her daughter. Caring for the infant was particularly difficult because of COVID-19 restrictions, which left her isolated and struggling with depression and anxiety while worrying about her 3-year-old child at home.

Travel also posed a major obstacle. The mother explained that she could not manage a three-hour drive back and forth while caring for her hospitalized newborn.

“They were trying to transfer us to a closer hospital, but one local hospital wouldn’t take her because of the PICC line and the other didn’t have beds. And there was a real shortage of home care nurses,” she wrote.

Home Care After Hospitalization

Fortunately, the mother had medical training as an infusion and injection nurse. Although reluctant, she was able to manage the PICC line and administer the intravenous antibiotics at home.

Without that background, the situation might have been much more difficult for the family.

The Long-Term Impact of Tick Exposure

The experience had a lasting emotional effect on the family.

The mother describes herself as having “tick PTSD [posttraumatic stress disorder]. We have 55 acres of hay field surrounding us and it has definitely changed the way we play outside.”

Clinical Perspective

Parents may face significant challenges when seeking care for pediatric Lyme disease, particularly in rural areas or when specialized care is required.

In this case, the COVID-19 pandemic added additional barriers. However, similar difficulties have been reported by families seeking diagnosis and treatment for Lyme disease even outside pandemic conditions.

Editor’s note: The mother’s difficulties receiving care were compounded by the COVID-19 pandemic. Nevertheless, I have had patients with similar experiences who found it difficult to locate physicians familiar with diagnosing and treating Lyme disease.