Rural parents’ experience in receiving care for their newborn with Lyme disease

LJ: I was bathing our newborn daughter, Violet, and saw a tick on her left arm. Three days later, she was very sleepy and hard to rouse. I noticed a rash — it wasn’t a bullseye, but it was definitely red. We live in a rural area and I made the decision to drive the 1.5 hours to SickKids, with her being only 4 pounds. I figured we would likely be shipped there anyways.

She was in hospital for 10 days. It was stressful. Her twin was still in a hospital closer to home. Because of COVID-19 restrictions, Garrett was only allowed to visit for 4 hours a day. I felt very isolated. I was staying at SickKids with Violet on a little bed and was experiencing some depression and anxiety. We also had a 3-year-old at home, so that was difficult.

GD: It’s a 3-hour drive there and back. I was leaving one kid at home to see another. It made everything hard and all the COVID-19 protocols were a pain in the butt. There was some difficulty with me getting a visitor’s pass because only one of us was supposed to be there. It was really emotional for me.

LJ: After a few days in hospital, Violet was really only there for her daily [antibiotic] infusions through a PICC [peripherally inserted central catheter] line. 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. Luckily, I am a specialized infusion and injection nurse. They showed me how to set up the pump and do PICC care, so we went home and I did her infusions.

I found it strange that a hospital wouldn’t take her because of the PICC line, yet it was okay for me to give her infusions at home. I was nervous Violet would pull the PICC out and I would have to do emergency care. I felt extra cautious about cleaning and making sure I was flushing and locking it properly. I do it every day at work, but its different when it comes to your own child. And I don’t typically work with babies. I knew it was being done correctly and that was reassuring, but I did have anxiety around it.

I now have tick PTSD [posttraumatic stress disorder]. We have 55 acres of hay field surrounding us and it has definitely changed the way we play outside. — Leah Jobb and Garrett Dekeyser