A lifeline for families with asthma

Nilda Gabin knows how terrifying it is to rush to the hospital with a child who is having trouble breathing — fortunately, that hasn’t happened to her in two years.

“The scariest part is to see your child struggling to breathe and you can’t do anything to help them at home,” says Nilda, who recalls racing to Boston Children’s Hospital in an ambulance in the middle of the night with her daughter, Kailisa.

While at the hospital, Nilda learned about the Community Asthma Initiative (CAI) and enrolled in the program. The CAI was created in 2005 to address the issues contributing to the high rate of asthma. It is designed to help families in Boston who have children with poorly controlled asthma. Nilda, who has four children with asthma, says CAI helped her learn to better manage their asthma medications and create a more asthma-friendly home.

Once a family enrolls in the program, a community health worker visits them at home. “When you walk into these families’ lives you are there for asthma, but you really are not there just for asthma,” says Margie Lorenzi, CAI’s community health worker for the past 11 years. “You also help them with their immediate needs like housing or transportation to their next medical appointment.”

Boosting health literacy

Lorenzi provides case management, support and education about asthma. “We are serving a community that sometimes can be forgotten. Providing them with this knowledge is very important,” says Lorenzi.

Kailisa has severe asthma and has been hospitalized six times. “Before I met the CAI team, I really didn’t know too much about asthma,” she says. “I had asthma when I was younger, so I knew about inhalers, but I didn’t know much beyond that.”

Nilda says she made a common mistake of stopping her daughter’s controller medicine when she wasn’t having any asthma symptoms. A controller medication, such as an inhaled corticosteroid, is designed to work over time to reduce airway inflammation and help prevent asthma symptoms. It is supposed to be taken daily — even when symptoms are not occurring.

Nilda also learned to look for early warning signs — a cough or cold could mean an asthma flare-up is just around the corner — and give her daughter the medications to prevent it.

Asthma is the most common diagnosis for children being admitted at Boston Children’s. The majority of those children live in predominantly low-income, neighborhoods of color.

Another important part of CAI is to help families reduce triggers in their home, such as pests, dust, or harsh cleaning products. Lorenzi showed Nilda how to make homemade cleaning products that won’t irritate her daughter’s airways like store-bought cleaning products. Nilda says she used to sweep her hardwood floors until she learned that vacuuming was more asthma-friendly. “There are a lot of things that can trigger asthma that you wouldn’t even know,” she says.

Advocating for families

In her last apartment, Nilda faced the problem of neighbors who often smoked marijuana, sending the strong smell through the vents into her apartment.

The CAI team wrote letters to the landlord on Nilda’s behalf about how her living conditions  — from smoke to mice droppings — could affect her children’s asthma. This helped motivate her landlord to improve pest control.

In the United States, nearly 10 percent of children have asthma, but the rates among black and Hispanic children are higher. In Massachusetts, 14 percent of black and Hispanic children have asthma, according to the Massachusetts Department of Public Health.

Nilda has also struggled with the forced-air heating systems in her apartment. This type of heating system blows a lot of dust into apartments and can trigger asthma. Lorenzi helped her cover the vents with cheesecloth to reduce dust.

“Margie has helped me so much with asthma but also with other resources, too,” says Nilda. “I know if I have any issues, I can always call or text and she’s there for me.”

Nilda says CAI has made a huge difference for her family. It has been about five years since she enrolled in the program. Kailisa, who is now 9, is doing well and so are her siblings. Nilda hopes that more parents will benefit from CAI.

“I would definitely recommend for anyone who has kids with asthma to get involved with the Community Asthma Initiative,” says Nilda. “It will improve your child’s health and teach you things that you didn’t even know would trigger asthma.”

Learn more about about the Community Asthma Initiative (CAI).