After 287 Days in the NICU, Little Victor Heads to Washington

June 21, 2018 12:00 PM

Two-year-old Brynn’s family is sharing the impact of the crucial support they have received on Capitol Hill as part of Speak Now for Kids Family Advocacy Day.

For the first 10 months of Brynn Altizer’s life, home was a hospital room.

Born more than 14 weeks early with severely underdeveloped lungs and weighing 1 pound, 7 ounces, Brynn fought life-threatening health complications, including a collapsed lung, meningitis, two bacterial infections and pneumonia. Her twin brother, Will, died days after birth from pseudomonas sepsis and respiratory distress.

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In all, Brynn spent 287 days at the University of Michigan C.S. Mott Children’s Hospital — most of it in the Newborn Intensive Care Unit and relying on a ventilator to breathe. She was finally able to come home in March 2017 on a home ventilator.

The now 2-year-old, her 4-year-old brother, Nicholas, and parents Marie and Robert are preparing to travel from their home in Canton, Michigan, to Washington, D.C., to share their story with legislators during Speak Now for Kids Family Advocacy Day hosted by the Children’s Hospital Association. Their message: Excellent care and support have been critical to their family.

Since coming home, Brynn has required round-the-clock care, including a home nurse to supervise the toddler overnight to ensure her tracheostomy tube stays in place — if it were pulled out, it would be fatal. Her mom, Marie, also had to leave her sales job so she could provide Brynn with the constant care required for children with trachs.

“A child with a trach can never be left alone — not even during sleeping hours. If she pulls it out or it comes out for any reason, it could be minutes,” says Marie.

“I don’t know how we could give up a full-time salary and make sure Brynn gets the best care possible without this kind of support. It’s priceless.”

‘A chance at a normal life’

During her stay at Mott, Brynn required five surgeries, including a PDA (patent ductus arteriosus) ligation to close a heart defect, the tracheostomy and cleft lip repair. In addition to her coverage under private insurance, Brynn qualifies for Medicaid because of her medical complexity. Children’s Special Health Care Services also covers gaps in support.

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Brynn still requires regular physical and occupational therapy as well as speech therapy with her Mott care team to work on two of her biggest goals: walking and talking. She also receives services at the behavioral feeding clinic to help her learn to drink and eat on her own, which is often necessary for children who have been incubated and on a feeding tube for a long time.

Today, Brynn has started crawling and babbling.

“It took us a long time to actually believe she would be fine and have a chance at a normal life because she was so sick for so long,” Marie says. “But here we are two years later, and she’s off the home ventilator and we are talking about the possibility of getting her trach out this summer. She’s crawling and starting to make sounds and saying words that sound like ‘mom’ — things I never thought I’d see.”

Brynn, whose family describes her as “spirited,” begins every day with a smile and a hug. She loves swinging, dancing to “Moana” and playing with big brother Nicholas.

Brynn’s family joins other families from across the country who will travel to the nation’s capital June 27 to advocate on behalf of children’s health. Families will meet with legislators and their staff on Capitol Hill to share stories of their health care journeys and highlight how public policy can influence their access to health care.

“Every minute we spend in therapy is so valuable to us. I can’t imagine not receiving the education I get every week at our appointments to come home to take care of Brynn every day,” Marie says.

“Children with special needs and chronic conditions can get better with the right support and the right help. If anything is taken away from them, then they will fall short where they shouldn’t have to.

“Right now there are talks of Brynn going to kindergarten on time and being in a regular classroom, which were once unimaginable,” Marie adds. “With continued therapy and the wonderful care we receive at Mott, her potential continues to grow. Every child should have that opportunity.”

Follow Brynn’s visit to D.C. on Twitter through the #SpeakNowforKids hashtag.