Madeline Holt is a bubbly, positive 3-year-old who likes to cuddle, listen to music, play with blocks and cars, and, in typical toddler fashion, do what she wants to do when she wants to do it. She is also strong and determined to beat all odds stacked against her.
At age 1, Madeline was diagnosed with Zellweger syndrome, a rare genetic condition that destroys the white matter in her brain. The condition leads to a number of other complications, including seizures, respiratory problems, liver failure and even brain hemorrhages. Most children with Zellweger syndrome do not live past 1.
There’s no treatment for Zellweger syndrome. Instead, caregivers at Seattle Children’s treat Madeline’s symptoms as they occur. Madeline is blind, has very limited mobility now and has a feeding tube. Despite these obstacles, she has mastered 50 different sign language signs.
“You learn to accept the disease for what it is,” said Meagan Holt, Madeline’s mother. “It’s terrible, but for today, she’s here and that’s all we care about.”
Every moment counts
Holt and her family are no strangers to tragic stories. Before getting pregnant with Madeline, Holt delivered a stillborn baby at 22 weeks and another stillborn baby at 19 weeks. She also had a son at 30 weeks who passed away when he was 18 hours old.
After Holt was diagnosed with Zellweger syndrome, the family had the DNA tested from their son who had died. He, too, had the genetic condition.
Madeline stays at Seattle Children’s often to treat many of her symptoms. Last year, she had kidney stones and would have frequent seizures every day. At that time, the care team put her on active end-of-life care. But things improved. Although she is no longer on active end-of-life care, she is on hospice care.
“Losing children, especially in pregnancy, kind of changes your outlook when you do have children on how you want to raise them and just how precious your time really is,” Holt said. “Now, with Madeline, we just know that every moment is so precious with her.”
Finding beauty in tragedy
Each week for the past six years, professional writers from the Seattle Arts and Lectures’ Writers in the Schools (WITS) program have worked with patients at Seattle Children’s to help them discover the power and therapeutic nature of the written word by writing their own poetry.
Additionally, Elizabeth Austen, senior communications specialist for content strategy in Seattle Children’s Marketing and Communications Department and the Washington State poet laureate for 2014-2016, hosts monthly poetry and reflective writing sessions with Seattle Children’s staff and faculty members as a way to process their emotions about their work.
In 2014, the Pediatric Advanced Care Team (PACT) at Seattle Children’s received a grant through the hospital’s Fund for Excellence to launch a journaling program for parents and caregivers of patients with life-limiting illnesses. The program was created by licensed social workers and PACT consultants Julie Arguez and Karen Gordon.
The Fund for Excellence provides one-time, start-up expenses for internal projects that align with Seattle Children’s strategic direction.
“It’s a piece of our work that’s always been missing,” Arguez said. “There’s not a lot of time and space, especially for these caregivers in the midst of crisis. This program gives them time to pause and reflect about what their child is going through and how it impacts them personally.”
Through the program, Sierra Nelson, a poet and teaching artist, works with families twice a month in their child’s hospital room to chronicle their emotions and journey through poetry and journaling. Nelson also works with patients through the WITS program at Seattle Children’s.
“It’s almost like a deep breath for these caregivers,” Nelson said. “It’s different than therapy, although it has therapeutic properties, similar to meditation. It allows them to express themselves, and connect with one another and with their child in a refreshed and deeper way.”
Holt always kept a journal as a child and through adulthood, but gave up writing after having her children. Last March, she began working with Nelson and has been journaling every day since.
“Our story is so tragic, but the journaling program has helped put some beauty back into it,” Holt said. “It’s really helped me outlet all of those emotions that I didn’t know what to do with and I was hiding for a long time.”
A unique program
Arguez and her colleagues have done a vast literature review and have not found similar writing programs for parents, caregivers and patients in other palliative care settings around the country.
“It’s a necessary complement to the services we provide to patients and families,” Arguez said. “We just have to find a way to sustain it from a monetary point of view.”
Arguez said she has been amazed by the success of the program. Many families had never written before, but thanks to the encouragement of Nelson and the PACT team, continue to write.
“Sierra is just so amazing and positive,” Holt said. “She really helps show you it’s not a selfish thing and if you are doing something for yourself, you’re going to be able to take better care of your kids.”
For Holt, the experience has made a profound difference for her family. It has helped improve communication with her husband so they can better understand each other’s emotions. The couple also has a 1-year-old daughter, Olivia, who does not have Zellweger syndrome.
Although the Holt family doesn’t know what each day will bring for Madeline, Holt says she will continue to write and help her daughter have the best life possible.
“Words can change lives,” she said. “Look at what it has done for my family in a short period of time. To be able to help other families cope without talking to a counselor is pretty priceless.”
How you can help
The journaling project is in need of funding to ensure it can continue to be a resource for parents. To help support the project, visit our donation page and in the “I want my gift to go to” section, select “Other” and type “Parent Journaling Project.”