Kelley and Ethan – Hopkinton, NH

LymeLight Foundation Congenital Lyme Story for Kelley And EthanAfter becoming very sick in high school, Kelley endured years of symptoms without a correct diagnosis. She was finally diagnosed with Lyme disease, Babesia, and Bartonella after 16 years of suffering. Her long history of infection had shut down her pituitary gland and she faced significant fertility issues. After working for many years with her Lyme doctor, she was in a stable place and was able to get pregnant. The day she found out was extremely joyous, but Kelley knew she had to be careful since Lyme disease can be transmitted in utero.

During her pregnancy, Kelley was closely monitored by both her Lyme doctor and Obstetrician. Towards the end of her pregnancy, she developed HELLP syndrome, a severe type of preeclampsia, and had to have an emergency cesarean section under general anesthesia. At 36 weeks, Ethan was born at 4lbs 6oz. “He was a cute little peanut,” Kelley said.

Kelley had the umbilical cord, cord blood, placenta, colostrum, and foreskin tested for Lyme disease and co-infections and all came back negative. Everyone was relieved and her Lyme doctor recommended that Ethan get repeat testing for Lyme disease as a toddler.

As a newborn, Ethan suffered from severe feeding issues, colic, sleep difficulties, and sensory issues, like not wanting to be held. Multiple tests—labs, ultrasounds, x-rays, MRIs, and EEGs—all came back negative. Ethan missed developmental milestones and was diagnosed with Autism Spectrum Disorder with Mixed Receptive-Expressive Language Disorder. By age 3, his feeding troubles led to the placement of a G-tube. Ethan was tested for Lyme when he was 3 ½ years old through IGeneX. The test came back positive. Kelley and her husband were devastated.

By the time they applied for a LymeLight grant, Ethan was facing numerous medical issues, including sensory processing disorder, and his difficulty communicating led to behavioral issues and anxiety. The diagnosis of Congenital Lyme disease on top of all his medical issues was very stressful. Kelley’s own Lyme disease and co-infections left her disabled and unable to work. Trying to afford treatment for both Kelley and Ethan on a modest income was overwhelming. The family needed help paying for Ethan’s treatment, such as regular visits to his Lyme doctor, as well as expensive compound prescription medications and supplements to treat him.

“A LymeLight grant was a lifesaver for us,” Kelley told us. The grant allowed Ethan to continue his supplements, prescriptions, and doctor visits without a pause in treatment. “We wouldn’t have been able to do what we’ve been able to do without it.”

Kelley’s hope for the future is that Ethan won’t face a lifetime of problems as Kelley has. Her advice to anyone pregnant with Lyme disease is to find an LLMD immediately, start treatment and keep hope.

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