Heart to Heart

by Sally Jack
Contributing Writer
Facing open heart surgery is a worry at any time, but when you are only 13 years old, it can be downright scary, especially when you are worried about how your mom is going to pay for it all. And for Avery Shanahan of Monticello, that is what she will face during her summer vacation.
Ebstein’s Anomaly is a rare congenital heart defect which affects only 1 in 10,000 – and Avery is that one in ten-thousand.
Within an hour of her birth, Avery was in the Neonatal Intensive Care Unit on an IV. She spent her first month at home on oxygen.
Ten to twenty-five percent of children born with Ebstein’s Anomaly also have WPW, or Wolff-Parkinson-White syndrome, and Avery is also one of that percent. In this condition, an extra signaling pathway between the heart’s upper and lower chambers causes a fast heartbeat and fainting, and in January 2021 Avery underwent her first heart surgery for WPW to correct the electrical activity of her heart.
In spite of her heart condition, Avery has pretty much been able to keep up with other children her age, but two days before Christmas 2023 while Avery was playing girls basketball in Monument Valley, she struggled to have enough energy to play. Her mother and grandmother noticed that she was beginning to turn blue with the effort to breathe; something was wrong.
They called her cardiologist at Primary Children’s Hospital in Salt Lake City; testing followed, including an echocardiogram, stress tests, and then a cardiac MRI in January. The cardiac MRI revealed that the right side of her heart was increasing in size while her heart function was decreasing.
A panel of three doctors at the Mayo Clinic in Rochester, Minnesota, who specialize in children’s cardiology discussed Avery’s case and unanimously agreed that Avery would need to have heart surgery to repair her tricuspid valve, and Avery’s cardiologist at Primary Children’s agreed that she needed it NOW. Without it, heart failure is a very real possibility.
In spite of the prognosis from the four pediatric heart specialists, Mom Tia’s insurance has been difficult to work with— balking at covering any of the costs for a condition they state is “non-threatening and non-emergent.” And although the Mayo Clinic is one of only a few hospitals in the United States who perform this type of surgery on children, it is “not a network provider.” If the insurance will not help with some of the cost, Tia will need to arrive at the Mayo Clinic with $200,000 up front for the surgery.
A single mom, Tia works three jobs: as a nurse at the San Juan Hospital in Monticello, on the side as a home health nurse, and now weekly at Elk Ridge Wellness, administering IV Therapy. She works hard, and has also been busy organizing fund raisers to come up with the staggering amount of cash this life-saving surgery will require.
Life has been a whirlwind for Avery and Tia ever since they moved to Monticello in August 2020. Three days after they arrived in Monticello, Tia received a diagnosis of skin cancer and three months after that Avery had to have heart surgery for WPW, while Tia spent the next year undergoing treatments for cancer. Now, they are looking at open heart surgery.
Avery’s surgery will take place at the Mayo Clinic in Rochester in July. They will be gone for a month. During the six week recovery period, Avery will not be able to lift or pull anything more than five pounds. Other than walking twice a day to build up her endurance, Avery will mostly need to keep quiet at home.
Her mom Tia says, “It’s not going to be easy. Avery is an active girl. It’s hard to keep her indoors at any time! She likes to ride her bike, jump on the trampoline, play basketball, volleyball, and softball, ride her horses, play with her dogs, and go hiking. Her favorite subject at school is P.E. She needs to be able to breathe and have energy for that. She loves life. She’s caring, loving, and has a ‘good heart’ in the best sense of the word. She’s just a good kid.”
She continues, “We are so grateful for the communities we live in, and I am saying that in the plural sense, because it’s not just one town or community that has been helpful, it is this whole area. People are so kind and generous to us. We are so grateful for the help and the donations you have given us. If you can’t or don’t want to donate, just pray for her. We appreciate your prayers. And thank you.”
Keep an eye out for fundraisers for Avery to be held both before and after the surgery which will include raffles, dinners, silent auctions, and a golf tournament.