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Research project aims to help medically fragile children


Some Escondido mothers who are the parents of medically fragile children are working with a researcher from UCLA on a Photovoice project that will be unveiled June 20 online.

The project involves several San Diego based moms of medically fragile kids. Rady’s Children hospital is involved with this as well and nearly all of the participants in the study live in San Diego County. 

They have put together a virtual event on that date that they want local residents to attend. 

The invitation to the virtual event “What would I do to take away your pain?” was created by Jesse Van Leeuwen and other moms. She is the mom of 6-year-old-Nora. She told The Times-Advocate, “Our study utilizes PhotoVoice to gain a better understanding of how mothers navigate the day- to- day psychological, social, and physical realities of having a child with medical complexities.”

According to Wikipedia: “Photovoice is a qualitative method used in community-based participatory research to document and reflect reality. … Participants are asked to express their points of view or represent their communities by photographing scenes that highlight research themes.”

Van Leeuwen is a writer, campaign manager for the “The Moms We Love Club,” and a mother of two: Nora, 5 and Everett, 3. She recalls, “At 3 months old, my daughter, Nora, was diagnosed with a rare form of epilepsy —Aicardi Syndrome. When we brought her home from the PICU, I began writing about my family’s day- to- day journey with chronic illness.”

She continued, “Story- telling has been one way I have been able to invite my family, friends, and extended community into the beautiful chaos that is our life with medical complexities. I am a part of this study (as a co- creator and participant), because I believe the world needs more real shares. Real shares build compassion, understanding and connection — especially within tangible communities of people. I am excited to share my perspective through PhotoVoice, because I recognize there is a lack of knowledge, and resources, for mothers of children with medical complexities. I’m hoping, together, we can work towards changing that.”

The purpose of the study is “to give mothers of children with medical complexities a strong voice by highlighting the experiences of a small, collaborative, group of women.”

The findings of this project will (eventually) be presented at the Rady Research Symposium as Dr. Lesser, Nora’s pulmonologist, has agreed to sponsor the six mothers’ involvement.

The women will use visual arts to share their stories and decide, together, what ought to be done to improve the condition of their lives — their children’s lives. 

Our hope is that the women who participate in this study will leave feeling empowered and know that their voices can make change— that their opinions matter — not just in the life of their child with medical complexities, but also in the lives of all children with medical complexities. This women working together will create and share action items for the local healthcare community and the complex systems and organizations that serve their families.

According to the project’s website: “They will share their action items, photographs and narratives, and ultimately, their collective voice, through a community art gallery — a gallery intended to expand humanity’s capacity for empathy — a gallery where everyone has a seat at the table.”

The six moms and a researcher will (virtually) welcome you into their lives and the work they have done this last year. 

They write: “To introduce you to each mother and their children on this project, we will send Tuesday Event Briefings. In each of these briefings, a mother will share her medical motherhood origin story. We encourage you to engage with each mother’s story by reading her words, and allowing yourself to see the world through her eyes. As you reflect on each woman’s story, we encourage you to assume the role of researcher by submitting questions for our event Q & A. We look forward to meeting you!”

On June 20, 2020 six mothers of children with medical complexities will welcome you into their lives through photography and perspective sharing. This is Rachel’s story: “Jacob seemed to be struggling for breath from the time he was born. My husband and I questioned his work of breathing while I was still on the surgery gurney. Doctors and nurses brushed it off as amniotic fluid and commented on his ‘cute snorts.’ I assumed the medical professionals were correct, but my husband was less confident and asked anyone who entered our hospital room if Jacob’s breathing was normal. 

“As Jacob’s breathing became noisier our concern heightened, until finally, a medical assistant offered to monitor his breathing so we could rest. When she placed an oxygen monitor on his tiny foot, it showed he was desatting within 70% ranges.” 

Late that night Jacob and Rachel’s husband were whisked to the NICU (Neonatal Intensive Care Unit). Rachel woke up on day three after giving birth  alone and confused in a hospital room. Jacob was transferred to Children’s Hospital where tests revealed he had a rare midline birth defect that affects his upper respiratory anatomy called SMMCI. Rachel recalls, “This was only the beginning of Jacob’s life-altering diagnoses but it was our starting point in becoming parents to a child with medical complexities.”

Questions for Rachel, or the project’s panel of mothers, can be emailed to the project’s researcher, Melanie Sonsteng-Person at masonsteng@ucla.edu. Anyone reading this is encouraged to invite friends or members of their professional community to RSVP to this virtual event through eventbrite (tinyurl.com/heartofmotherhood).

To learn more, visit the Two Moms & A Researcher website www.melaniesonsteng.com/two-moms-a-researcher. 

RSVP: www.tinyurl.com/heartofmotherhood

Two Moms & A Researcher Project Website:

 www.melaniesonsteng.com/two-moms-a-researcher

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