Step into the heartfelt journey of our Māmā of the Month, Emily, as she courageously shares her experience navigating the challenges of her daughter's battle with rat lungworm disease, shedding light on the strength and resilience that define her motherhood.
In the beginning of 2023, Elowen began a battle with Rat Lungworm disease, a parasite infection prevalent in Hawai'i. Emily, her partner, and Elowen spent 7 months at the Kapi'olani Medical Center while Elowen battled for her life. Today, Elowen is on a road to recovery and starting to return to her happy, normal self! Continue reading to learn more about this 'ohana's journey from Emily's voice.
I often find myself scrolling through the photos of my perfect, healthy, 15 month old baby, looking for the moment that it all changed, the moment that the parasite entered her little being and started its pursuit of her brain.
I will never know how she became infected, if it was in a potluck dish or something she crawled over during the second my back was turned. Her first symptom was fussiness, and then she became extra tired. Just after New Years, when she stopped wanting to stand and climb, we took her to urgent care. The young doctor acted like we were overreacting and told us that her symptoms were from teething. Two days later we brought her to our pediatrician who sent us to the emergency room, who then sent us to Kapi’olani Medical Center, and suddenly I found myself living in a hospital room for seven months doing everything I could to give my baby a chance to survive and then recover.
It took a week to diagnose her once we got to the hospital, the whole time I was expressing fear that it could be Rat Lungworm, because it’s extremely prevalent in my community and has killed people.
During this week she became lethargic almost to the point of unresponsiveness, and her downward slide lasted another month, where she stopped talking and swallowing. Her treatment of an anti-parasite medication and extremely high doses of steroids finally took effect and she began very slowly improving. It was Easter when I hit rock bottom in Mom Land, that was the week I realized that my baby may not walk or smile again. We sent a mass text to our friends and family worldwide and asked for prayers and good thoughts, we also began supplements and vitamins that were recommended by a Rat Lungworm expert, and by research about pediatric brain injury.
Then, like a miracle, she began to smile, and kick her legs, and laugh, and roll, suddenly she was exceeding everyone’s expectations. In the beginning of August we finally returned home for the first time since we left for the pediatrician on January 6, our sweet baby almost walking (again) and continuing to heal and progress at a miraculous rate. A year since this nightmare began we are in therapy four times weekly and still gaining skills like a rockstar. I hope sharing our story will help other families be aware of this danger hiding in our backyards. I also want to inspire parents to be their children’s advocates, nobody knows your child better than you, if you think something is wrong or worse, it’s good to go back to the doctor again or get a second opinion.
Without Kapi’olani Medical Center and their amazing staff of therapists, nurses, doctors, healers and specialists our story would have had a very different ending. The hospital staff became like family, even the housekeepers and kitchen staff would celebrate her progress. The nurses held our world together in the crisis times and never let me lose faith even in the darkest days. The therapists are amazing, brilliant and devoted, making sure I would be ready to help my baby continue to gain skills and thrive even when we were back home. Our doctors were kind, creative, good listeners, willing to try new things and work with our family for our child's best possible outcome.
We love Coco Moon. We have enjoyed Coco Moon comforts since our baby was born. Elowen’s skin became very sensitive from the nerve and brain injury. Once she could tolerate them, we put her in soft buttery fabrics. It felt good to see her in “real” clothes and helped the months we spent in the hospital feel a little more cheerful.
Rat Lungworm Awareness
For further insights into Rat Lungworm, including information on symptoms, suggested approaches for treatment, and educational materials, explore the resources available at the Rat Lungworm - Big Island Invasive Species Committee (BIISC) website here.