Hope and Help for a ‘Tenacious’ 4-Year-Old and Her Inspiring Team
To her parents, she is “our cuddle bug” or “sweet Teagan Ann.” But to the hundreds of people who are following her young life’s journey on Facebook, 4-year-old Teagan Romano is known as “Tenacious Teagan.”
“Our little nugget is such a fighter,” wrote Teagan’s parents, Kelsey and Shaun Romano, in a recent post.
Teagan has been facing serious illness most of her life. When she was nearly two years old she developed a light tremor. The first pediatrician her parents consulted in the summer of 2018 believed she would grow out of it. Unfortunately, that would not be the case. After further examination, including an MRI, she was diagnosed with metachromatic leukodystrophy (MLD), a degenerative and terminal genetic condition affecting the brain and nervous system.
It was a devastating diagnosis. MLD would eventually rob Teagan of her ability to walk, speak, eat and move on her own. It would leave her with a compromised immune system and require many trips to the emergency room at Children’s Hospital Colorado Springs from their home in Elbert, Colorado. Against many odds over the past few years, Teagan continues to brighten each day. And her parents, despite the immense heartache from a terminal diagnosis for their child, are choosing to make the most of every day they can have with Teagan.
“The grief is constant. Grief for the past, grief for the present, grief for the future,” Kelsey said. But with the help of palliative and hospice care, the family manages Teagan’s symptoms so they can be present in each moment with her.
“We loved the idea of the extra layer of support and medication management,” Kelsey said about first learning of palliative care on one of their trips to the ER. That’s where they met Dr. Brooke Geyer who leads the Pediatric Pathways Program at Pikes Peak Hospice & Palliative Care (PPHPC). As Teagan’s illness progressed, the visits to the ER continued. Just before her third birthday, Kelsey and Shaun had to decide if Teagan would undergo surgery to remove her gallbladder. Dr. Geyer was there with the family as they grappled with the challenges that could arise from the procedure because of her weakened condition.
“Do we do a DNR [do-not-resuscitate order]? Do we not? Those talks that no parent wants to have, we had to,” said Kelsey. That’s when Dr. Geyer gently brought up hospice.
Kelsey said they were hesitant at first. They worried that “hospice” meant giving up. But Dr. Geyer helped them understand it differently. The increased level of care that comes with hospice would mean extra support for Kelsey and Shaun. It would also mean fewer ER visits for Teagan, and that has become particularly important during this pandemic to protect Teagan from exposure to COVID-19.
“We’ve been able to treat aspiration pneumonia from home because of Pikes Peak Hospice,” Kelsey said.
Teagan has been receiving at-home hospice care from PPHPC since her third birthday. Her care team consists of Dr. Geyer, registered nurse Joan Goodfellow, and social worker Becky Gardner, along with physical, massage and music therapists who make regular trips to the Romano’s home.
“It is such a tough decision for families to choose hospice support,” Becky said. “Even talking about terminal illness is very difficult. Families always want their kids to be okay and hospice can help make sure they are as comfortable as possible.”
Kelsey is Teagan’s primary caregiver day-to-day — and even went back to school in 2019 to become a certified nursing assistant (CNA) to better care for Teagan. Kelsey said her education program made her realize most training for caretaking is oriented toward geriatric patients. She is grateful to have so many pediatric experts on Teagan’s hospice team.
Teagan’s dad, Shaun, said it means a lot to him to see how much the PPHPC team cares about his daughter.
“Our hospice team, it’s like an extended family,” Shaun said.
There are many hard days for Teagan and her family. But they also have high hopes for many great days and joyful experiences ahead. After enough people have been vaccinated against COVID-19, Kelsey and Shaun are excited to take Teagan to visit other friends, family and the Grand Canyon. The Romanos are currently converting an old school bus into “Teagan’s Trolley,” a house on wheels specially equipped to take Teagan on these trips.
“I want to see her light up when she sees these places,” Shaun said.
For now, Teagan and Kelsey remain quarantined in their home in Elbert, while Shaun goes to work as a contractor. They listen to music, finger paint and cuddle beneath a wall of stuffed animal friends. Though she is now non-verbal, Teagan still finds other ways to communicate with her parents.
“She just adapts, and she’s so patient,” Shaun said about his little girl.
“Her life still matters,” Kelsey added.
The Romano family is also hopeful for a better future for others diagnosed with MLD. Through sharing Teagan’s story on social media, they are raising awareness about the critical need for early detection. MLD is most often diagnosed in late infancy, though juveniles and adults can develop the illness. Often by the time symptoms show, treatment to slow the progression is ineffective. The Romanos are now advocating for MLD to be included in newborn blood screening.
“We won’t ever stop spreading awareness and being our child’s voice. And helping be voices for others like her too,” wrote Kelsey in a post on the “Tenacious Teagan” Facebook page.
“I love you so so much Teagan Ann. I will be your voice until my very last breath.”