‘Happiest Girl in the World’ Thrives Since Heart Transplant
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Tessa Agnoli was born in February 2018 with congenital heart defects that required her to spend nearly all of the first year of her life in the Pediatric Cardiac Intensive Care Unit at University of Maryland Children’s Hospital.
On Feb. 25, 2019, just after her first birthday, Tessa received a new heart from an organ donor. She is thriving and continuing regular visits with the experts in the Pediatric and Congenital Heart Program at University of Maryland Medical Center (UMMC).
We recently caught up with Tessa and her mother, Courtney Agnoli, as the family approached the 3-year anniversary of Tessa’s transplant on Feb. 25, 2022.
How has Tessa been doing with her new heart, especially considering the pandemic?
Tessa’s heart is doing fantastic. She had her annual heart catheterization and biopsy and everything looks wonderful.
In some ways the pandemic hasn’t affected our life at all. We were already very cautious about going out into the world in order to protect Tessa. It was nice being able to have virtual appointments. [Before,] it always felt like we were on the go. The pandemic allowed for us to have more time at home. It allowed us to focus on Tessa and work with her to help her achieve her missed milestones. But we would definitely love to be able to get her out into the world more and allow her to live a more normal life. We hope the COVID numbers are better in the fall and she can start pre-school!
How is Tessa doing in her rehabilitation therapy visits to catch up on the development milestones?
Tessa is still working very hard to catch up. She’s scooting all over the place and learning how to stand. She can take a few assisted steps. She’s really communicating now and it’s been amazing being able to hear her express her needs, sing silly songs and talk to her sisters.
She’s still working on eating by mouth and is primarily G-tube fed [through a gastronomy tube]. But she tries, and she loves to drink water. She’s still in weekly therapy working on her goals. She’s the happiest girl in the world!
Tessa was in the hospital in December for her heart cath. They also ballooned her pulmonary arteries, so she did have to spend the night for that. But while she was there, she had some trouble getting off of oxygen and was found to have rhinovirus. She ended up staying two nights due to needing some additional support. She has been doing amazing since she’s been home.
Her hospitalizations over the past year and a half have definitely lessened compared to the first year she was home, which is awesome.
How are Tessa’s sisters? We see she has a new baby sister!
Noelle is 6 and in kindergarten. Juliette is 6 months old and Tessa just loves her so much! But she’s not very gentle!
Are you in touch with the other Children’s Heart Program (CHP) families who were part of the fundraising team at the Baltimore Running Festival in 2019? We remember Tessa and the other children enjoying that beautiful autumn day together.
We keep in touch with quite a few CHP families. Tessa actually had a play date with one of her little friends in the fall. They were born a few weeks apart and both spent a considerable amount of time together in the hospital during their first year.
The heart community is like no other. It’s been amazing to have so many other moms and dads who know exactly what we’re going through. I am in weekly contact with quite a few moms that I met at UMMC. We’ve made lifelong friendships and our kids will grow up having each other too!