Navigating Life with a Complex Condition
For Baxter employee David and his wife Lauren, receiving a complex medical condition diagnosis for their daughter meant facing a reality where her care didn't fit into a box. Through a well-connected support system and ability to provide care at home, they have forged their own path.
Lauren and David share how respiratory therapy1 is one critical piece in managing the care of their daughter Leila.
Q: Tell us a little about your family.
David: We have a 6-year-old son, Harrison, and a four-year-old daughter, Leila. When Leila was 6 weeks old, she started suffering seizures, and that began our family's diagnostic journey to understand what was happening. After many tests, conversations and meetings with specialists, we came to understand that Leila has a rare form of genetic epilepsy that was only discovered in 2017.
Q: After receiving Leila's diagnosis, how did your family navigate care plans?
Lauren: As we learned more about Leila's neurological condition, our conversations transitioned from how we manage seizures, to establishing how we provide support for severe hypotonia (low muscle tone), global development delays and other complications that come with neurological conditions, like respiratory challenges. For example, during Leila's first winter, she was admitted to the hospital for every cold she came down with. She couldn't clear her airways on her own, which caused her stress and discomfort, and created uncertainty and disruption for our family's routine. During one hospital visit that winter, and after much research and advocating on my part, we met with a pulmonologist who prescribed The Vest airway clearance system for Leila.
Q: What does an airway clearance system do?
David: One of the effects of hypotonia is that low muscle tone affects Leila's ability to have a productive cough. Therapy with The Vest system helps break up and remove mucus from Leila's airway walls. And regular respiratory therapy helps combat mucus build up and an environment where bacteria could grow and cause repeated lung infections.
Editor's Note: The Vest system uses a technology called High Frequency Chest Wall Oscillation (HFCWO). It works by connecting airhoses from a vest garment to an air pulse generator. During therapy, the garment inflates and deflates rapidly, applying gentle pressure to the chest wall. This works to loosen and thin mucus and to move it toward larger airways where it can be cleared by coughing or suctioning.
Q: What impact has respiratory therapy had on Leila?
Lauren: Personally, Leila loves putting the vest on. She is nonambulatory, meaning she is a wheelchair user, so during therapy, she sits on one of our laps and bounces and giggles. It's become a bright spot in our family's daily routine. More broadly, respiratory therapy has made a huge difference in our lives because it's kept Leila out of the hospital. When she comes down with a bug, we are able to stay home and manage it the same way a "typical" child would just have a cold. In this way, we can avoid the trauma and disruption that an extended hospital stay would cause our whole family, while also being able to work and be with Harrison.
Q: What's next for your family?
Lauren: While we do have some things figured out with Leila's diagnosis and care plan, we still very much need to take things day by day; you can't predict what's going to happen tomorrow. With COVID, we haven't been able to have social interaction with other children, so we are really looking forward to beginning that as the world slowly opens up. We are also enjoying Leila's increasing love for music and the strides she is making in communication, especially with her brother.
Our gratitude to Lauren and David for sharing their story.