Community news

Bronchiolitis and Child Respiratory Support Group

Melissa Patterson with her children

The Bronchiolitis and Child Respiratory Support Group NZ is a Facebook-based support group for parents and caregivers of children living with respiratory conditions. Melissa Patterson (pictured, top, with her children) created the group in 2015, after her son James suffered multiple bouts of bronchiolitis as an infant and toddler, hospitalising him many times. The journey she went through when James was little was isolating and created serious anxiety.

The group now has over 1,300 members, mostly from NZ but some from Australia, UK and the US. There are three group admins as well as Melissa: Andrea Bennett, April Mihare, and Rachel Crump (pictured, bottom, with her daughter). All three have children with serious respiratory conditions and know what it’s like to live in and out of hospital. Here, Rachel shares her perspective.

“I joined the group when my daughter Chloe was 3, and had been getting constantly sick with bronchiolitis, wheeze and chest infections. Multiple hospital admissions resulted in a bronchiectasis diagnosis just before she turned 4. Now 9, Chloe still lives with the implications of the conditions she has daily. Six months ago, she had a portacath placed in her chest to make IV treatments more accessible, since her veins had all collapsed from PICC lines. She also got caught up the RSV outbreak and was in and out of hospital from July to September.

“It’s particularly scary watching your child struggling to breathe, always getting sick and feeling helpless about the situation. Our group is a village. Many members have been through traumatic experiences with their own kiddos and understand the anxiety that comes with this journey.

“The group hears people’s concerns and shares experiences, from navigating certain hospitals to tips to get kids to take inhalers and spacers, and even ideas to help Bronchiectasis (BX), CSLD, and CF kids comply with their daily chest physio.

“More often than not we are an ear for that tired, emotional parent who is at their child’s bedside in hospital or has been up for what might feel the hundredth night with a coughing, wheezing kiddo, or who has just been rushed to hospital with their child and needs some love and calming words. With Covid in our communities now too, we are all on edge.

“Members often say they wish they had found the group earlier. We see many people doubting themselves about when to seek medical attention because they have been dismissed before. There’s a lack of follow-up and ongoing care with clear advice for parents about when to present to hospital with their child or when to see a doctor. Many don’t have asthma action plans and haven’t been shown the correct way to use a spacer and inhaler. This is where we help direct parents to useful resources such as ARFNZ or local asthma clinics.”

Rachel Crump and daughter Chloe

If you’d like to join the group, search for ‘Bronchiolitis & Child Respiratory Support Group NZ’ on Facebook.

Looking for a meaningful birthday gift?

The Foundation is delighted to be a chosen charity of the Good Registry, a brillliant organisation that gives people the chance to create gift registries or buy gift cards to benefit a good cause.

If you’re looking for a gift for that tricky-to-buy-for person in your life, and want to make a real difference for the 700,000 Kiwis with respiratory conditions, why not give with the Good Registry? Visit thegoodregistry. com.

We have a winner!

Huge congratulations to Phillippa Brosnahan of Wellington, who was the lucky winner of a signed copy of Tania CliftonSmith’s new book, How to Take a Breath. Happy reading, Phillippa!