Vigil at Everett park to remember lost little ones

Meagan and Brandon Holt have two daughters, 2-year-old Madeline and baby Olivia, born in June.

They will never ever forget the rest of their family, three other precious souls they carry in their hearts.

An infant son, also named Brandon, died March 17, 2011, just 18 hours after birth.

The young Everett couple also lost two other pregnancies, both stillbirths. In 2012, Meagan Holt was pregnant with a girl, lost after 19 weeks. And in 2010, before they were married, she was pregnant with a son. That pregnancy was lost at 22 weeks.

At just 24, Meagan Holt thinks of herself as a mother of five.

“People who have a loss sometimes don’t like to talk about it. That’s how I grieve, to talk about it,” she said.

To honor her own family and help others, Holt has organized a candlelight vigil Wednesday at Everett’s Grand Avenue Park in recognition of Pregnancy and Infant Loss Remembrance Day. With an open invitation on Facebook, Holt said the event that begins at 6:45 p.m. is intended for anyone who has lost a child or been affected by infant loss. The remembrance day, first observed in 2002, is recognized in the U.S., Canada and several other countries. Organizers hope to create a global wave of light, with candles glowing at 7 p.m. in every time zone.

Holt decided to create the event here after looking online for a local vigil and not finding one. “Last year I did it at the house,” she said. People coming to tonight’s event need to bring their own candles, she added.

Beyond their other losses, the Holts bear another heartbreaking hardship. Madeline, who was born nearly three months prematurely and is blind and deaf, has a rare genetic condition. She is on the Zellweger spectrum of peroxisome biogenesis disorders, a condition often called Zellweger syndrome.

There is no cure. “Most kids don’t live past 12 months,” Meagan Holt said. Babies with the condition are prone to seizures and respiratory problems. Madeline uses a feeding tube.

“We’re grateful she is here. We pray,” said Holt, who in April served as the 2014 March of Dimes March for Babies Ambassador. “With Madeline, it’s hard not to be positive. She’s so happy. Despite always going to different clinics, she still has a smile on her face.”

Since Madeline’s birth, the Holts learned that baby Brandon had the condition, too. “It is a spectrum. Brandon could not breathe, he was on a ventilator. Madeline was never on a ventilator,” Holt said.

Through genetic testing, she said, they also learned that both she and her husband carry two different types of the gene mutation that causes the condition.

“No wonder we had such problems,” she said. After the losses of her earlier pregnancies, Holt said, “we kept getting told this shouldn’t happen again.”

Her last pregnancy was unplanned. Olivia, born June 28, is not affected by the condition. Holt said her full-term pregnancy was an easy one.

Caring for their two children is a round-the-clock calling. Brandon Holt, who works full time, is a devoted father and helper, his wife said. She quit her job as an administrative assistant. “We live simply,” she said. “All I wanted to be was a mom.”

Before she came home, Madeline spent three months in the neonatal intensive care unit at Providence Regional Medical Center Everett.

Holt serves on a patient family advisory council, said Joanne Burke, manager of the Everett hospital’s neonatal intensive care unit. Burke said the council was created to help “improve patient experience in every area of care.”

“These are people who have been here and can share their experiences,” Burke said. In the event of a death, the hospital’s spiritual care staff provides support and information, she said.

Holt hopes her perspective as a council member will help other young parents who suffer losses.

And whether her family is the only one or others join them at the park, candles will light up the darkness.

“I take any opportunity to make our story heard, so other people who have gone through this know they are not alone,” she said.

Julie Muhlstein: 425-339-3460; jmuhlstein@heraldnet.com.

Candlelight vigil

Pregnancy and Infant Loss Remembrance Day, recognized each Oct. 15 with candle-lighting, will be observed starting at 6:45 p.m. Wednesday at Grand Avenue Park, 1800 Grand Ave., Everett. People need to bring candles. Information: www.facebook.com/events/962158490466456/

More about Pregnancy and Infant Loss Remembrance Day at: www.october15th.com.