Grayson “Miracle Baby”

Grayson James Barnes was born on June 9, 2021 at 2:59 PM at UW Medical Hospital in Seattle, WA.  During his mother’s pregnancy they received news that he had a critical heart condition. To be exact he had single ventricle anatomy with pulmonary valve atresia and discontinuous pulmonary arteries.

This heart defect would require at least three open heart surgeries before the age of six. His heart defect was caused by a rare underlying condition called Heterotaxy Syndrome that causes your organs to develop in misplaced and unusual ways. 

In May of 2021 Grayson’s mother, Justice Provo, graduated from Cashmere High School at 36 weeks pregnant and would then relocate to Seattle, WA with her mother, Jennifer MacCallum, to await Grayson’s big arrival. They stayed in the RV parking lot at Seattle Children’s Hospital in a family owned RV.

Cameron Barnes, Grayson’s father, would join them in the first week of June after he graduated from Eastmont High School.  Grayson had his first of many open heart surgeries on June 16, 2021 at just a week old. This surgery was complicated by a blood clot in his heart that sent him into cardiac arrest and put him on extracorporeal life support, the highest level of life support possible. Basically this machine was his heart and lungs for six days as he recovered from cardiac arrest. 

Grayson’s second open heart surgery was on October 16, 2021. This surgery went well but it was not the repair that had been planned for Grayson at this age, the Glenn, that he was no longer a candidate for. Three weeks post operation Grayson developed a blood stream infection causing him to go into heart failure. He was then evaluated and approved for heart transplantation in January 2022. On February 27, Grayson’s team of doctors accepted an offer on a heart. The operation was ten hours long and would be extremely complicated due to his anatomy.

This didn’t stop him, all went perfect in the OR. When Grayson got back to the CICU he had an acute case of pulmonary hemorrhage but eventually settled out and is now on the road to recovery from his heart transplant.  Grayson has gone through so much in his short nine months of life and still has a huge smile on his face.

To be exact he has had three open heart surgeries, four diaphragm plications from his right diaphragm being paralyzed in his first open heart surgery, five heart catheterizations, a g-tube placement, and a uncountable amount of x-rays, ultrasounds, echocardiograms, EKGs, CT scans, and lung perfusion scans.

He is an inspiration to all and continues to beat the odds. His parents have been by his side through it all and have only gone home once since May of 2021. His Grandmother, Jennifer, has been a huge resource of help during this challenging period of life.  This small family who was dealt an unfair hand has been shown nothing but love and support by their community.

They have reached their goal on GoFundMe of $30k and they have also been shown huge amounts of support by a community auction put on by Toni Andruss and Jenny Brooks. They feel so beyond grateful to have such a supportive community during this time and they have been absolutely blown away by everyone’s generosity. This money will help them be able to stay by Grayson’s side as long as he needs as he fights for his life. It will then go on to help them get on their feet after living at a hospital three hours away from home for ten plus months. 

Jennifer MacCallum Provo and Justice Provo quote: “I feel like one thing Grayson has really taught us is to live each day like it’s your last because nobody really knows how long they will be here for. He has shown us that even in a time of heartache life is still extremely beautiful and we are all beyond blessed for each day we are given on this earth. This journey with Grayson has been beyond stressful like you could never imagine… but it has also been the best year of our entire life. He brings so much love and joy to the world and he has strength like nobody you’ve ever met. We just want to bring our boy home.” 

“It was a miracle that he got a heart as quick as he did. We were told to expect to wait three to twelve plus months for this miracle. We will think about and pray for the donor family for the rest of our lives. They were so selfless in a time of devastation and we want them to know, wherever they may be, that we will take care of this miracle for every second we are given on this earth.” 

“The fact that so many people pulled together as we were feeling like falling apart means more than anyone could realize. Not only financially has our community supported us but also through prayer and good thoughts to our son. Our community’s faith and love has helped move mountains. God has put a strength in our little boy like no other. Your support for our family has helped give us immense hope during a time of heartache.”

“Grayson James turned nine months old this week and has spent his whole life inside of hospital walls. We are so beyond hopeful that this miracle we were given will finally get him out of the hospital and home with his family.”