2021 Nationwide Virtual Event Congenital Heart Walk

Team Jax and Owen

Congenital heart defects are the most commonly occurring birth defect, affecting approximately 1 in 110 babies born, or a child born every 15 minutes. Congenital heart defects are the leading cause of birth-defect related mortality.

Funded research is making a powerful difference in the lives of CHD patients, helping to reduce incidences and increase survival, longevity, and quality of life. Research has made a huge impact, and with survival and longevity increasing, even more research is needed to help address lifelong challenges that CHD patients will face. 

Our team is representing two incredible Heart Warriors from Wrangell and Petersburg, both born in 2020. These two boys are so inspiring to us, and we hope to support the life-saving research that has made treatment for our boys possible. Every dollar in support of The Children’s Heart Foundation helps to further their mission: to fund the most promising research to advance the diagnosis, treatment, and prevention of congenital heart defects. 

The Buness and Shumway families - along with any who would like to join us - will be gathering in Wrangell on Sunday, July 18th to participate in this year’s Congenital Heart Walk. We have been so blessed and fortunate with the support we have received from family and friends, and we have had the most amazing medical care from everyone involved in Jaxon and Owen’s treatment. This is why we are so excited for this opportunity to help raise funds for the Children’s Heart Foundation, in hopes that other kids can have the same level of care and support that we have received.

Get to know our Heart Warriors!

First, from Shawna and Jordan Buness:

On February 10, 2020 at 12:27pm, we welcomed Jaxon Timothy Buness into this world. What would normally be one of the most exciting days in our lives, unexpectedly turned into one of the scariest. Jaxon came via emergency C-section in Sitka, AK and after some concerns the doctor let us know that they weren’t sure what was wrong but Jaxon needed to go to a bigger hospital where they could offer him more care. He was sent via life flight to Anchorage, AK where he was admitted into the NICU for more testing. It was there that they discovered he had Tetralogy of Fallot, a congenital heart disease consisting of 4 heart defects that would require open heart surgery to repair. After 2 weeks in the NICU we were cleared to head home and wait until he was 6 months old and ready for surgery.

We traveled to Denver, CO for his first surgery on August 11, 2020. The surgery was a huge success and after only 5 days in the hospital we were released! What a champion that Mr. Jax is! Recovery went well, his 4 week post-op echocardiogram looked great and we breathed a sigh of relief and began to carry on with our lives.  Come February 2021 and at his 6 month post-op check we discovered that another surgery was needed to work on his pulmonary valve. He had his second surgery on May 17th, and although there were some setbacks with recovery this time, all in all it went very well! We are back home and recovering for now, though we were told that at some point we will need to return for another surgery to replace his pulmonary valve. Ideally, we hope to make it to 10 years old before that surgery is needed.

Despite all of these hurdles Jaxon has faced, he has remained the happiest, sweetest and strongest little addition to our family and we cannot imagine our lives without him. 

Next, from Ruby and Tim Shumway:

Our son, Owen D’Arcy Shumway, was diagnosed with Tetralogy of Fallot at 23 weeks gestation. Ruby had traveled to Anchorage for what we expected to be a routine scan with a perinatologist due to her type 1 diabetes. The diagnosis that came during that visit very quickly changed our lives. Ruby spent the summer making bi-weekly trips to Anchorage to see the perinatologist, pediatric cardiologist, and OB. In late August, Ruby went into preterm labor here in Petersburg. She was medevaced to Providence Alaska Medical Center, and Tim and Fitz followed shortly thereafter. Things were stabilized and Ruby was discharged, but given strict instructions to remain in Anchorage for close monitoring until the delivery, so the entire family remained. 

Owen was born on October 9, and spent the first 5 days of his life in the NICU. The cardiologist was optimistic regarding Owen’s prognosis, and two weeks later we were able to bring Owen home to Petersburg to wait for his surgery. Things went well, initially. Owen gained weight with a diet of fortified breastmilk, However, at Christmas things took a turn. Owen had a series of “Tet Spells” - periods of low blood oxygen saturation that occured after feeding or crying. Following some intense hospital visits in Petersburg, Ruby took Owen back to the cardiologist in Anchorage to follow up. It was determined that he needed the corrective surgery as soon arrangements could be made. With Owen’s condition deteriorating each day, supplemental oxygen and beta-blocker medications gave us just enough time to get to Randall Children’s Hospital in Portland, OR for his surgery. 

His surgery was performed on January 15th, and it was a great success. After 5 days in the hospital, we brought Owen back to Petersburg again, where he has been thriving ever since. His one-month post-op echo went well, and we will see the cardiologist again in August for another echo. He will need a pulmonary valve replacement in the future, but we are hopeful that it won’t be necessary until he is 10. 

Owen is perfect. Now, after a full year of fears and worries, it is hard for us to fully grasp that we really get to keep him. Just like his heart buddy Jax, he is the strongest, sweetest, happiest little guy. We can’t wait to watch these two take on the world. 

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