Hayes Willis Melheim was born on a Saturday morning August 6th at Sanford Children’s hospital in Sioux Falls. He was beautiful. He had a full head of dark brown hair and brown eyes.
The next few days were full of unknown as Dan and Arica were unsure if Hayes would be diagnosed with the same disease his older brother Hendrix was diagnosed with at 2 months old two years prior. They knew they wanted to have another child, so they went through a series of genetic testing before Hayes, and everything was coming back negative. Until Hendrix’s Whole Exome Sequencing which came back a month after Hayes was born. When Hayes was born, and his heart echo showed similar results to his brother Hayes was admitted to the NICU at just 12 hours old. They then found out they had a 1/16 chance of having another child with the same diagnosis, Pulmonary Hypertension expected to be from a rare unnamed mitochondrial disease.
Hayes was diagnosed shortly after with Pulmonary Hypertension and eventually sent home to be with his family at 12 days old. It was late September; Hayes had just been home a little over a month. It was at this time Arica knew Hayes may need a little more support than he was currently receiving. That led to a family trip out to Aurora, Colorado where Hayes’ older brother, Hendrix had previously spent a majority of his younger years receiving care for Pulmonary Hypertension.
Hayes’ time in Colorado was nothing short of a strenuous battle. A large portion of the doctors that had treated and found a treatment plan for Hendrix were stumped looking at Hayes’ case on what the next steps may be. After two and a half months of many trials, Hayes was sent home on a g-tube feeding tube, triple therapy and numerous medications to maintain his Pulmonary Hypertension.
Hayes loved being at home, surrounded by his brother, mom and dad. Hendrix thought the world of Hayes at just 4 months old. He just wanted his brother to play with his cars, put together puzzles, play peek-a-boo and watch Mickey Mouse. During this time Hayes enjoyed his first Christmas at home. His trip home ended abruptly after Hayes had shown signs of a decline. He was very sensitive and had no immune system. With a growing toddler in the home and the middle of a Minnesota winter, sickness had overcome him. It was at this time Hayes was flown out to Aurora Children’s hospital in Colorado.
Hayes’ medical story was full of ups and downs. Throughout every test, poke, sedation, intubation, heart echos and many more, Hayes showed everyone he was a fighter. He was brave, strong and fought his fight head on, like a buffalo. Hayes’ medical diagnosis looks much smaller when you begin working with a Buffalo’s focus, on the good things right before you. His smile is what made each day a little easier. He would smile at the nurses that would come in to check on him and would try to get any glimpse he could to see what was going on outside of his room.
Hayes was eventually transferred to Wisconsin Childrens in Milwaukee, May of 2022 to be closer to family. He had shown no progression and other treatment options were being discussed. This was when Hayes showed us once again just how strong he was. Hayes began a huge turn around after just a few short weeks when he began crawling, sitting, and was acting like a 9-month-old baby, he was very vocal. Hayes’ beautiful personality shone in Wisconsin, and once again Hayes had found a place where he knew he had the nurses wrapped around his little finger again. Hayes was able to come home 3 days shy of his 1st birthday. Arica and Dan felt relieved to bring their baby home. They describe it as if it was a breath of fresh air and looked forward to having their family all under one roof. Dan and Arica loved watching Hayes and his brother together, Hayes mostly picked on Hendrix, but he did not mind. Hendrix just enjoyed having him around and referred to Hayes as “brother.” During his time at home Hayes would crawl around stringing his oxygen cord throughout the house, and pulling all of the toys out on the floor that he could find. There was no such thing as clean when he was around, Arica couldn’t help but smile at the mess Hayes would happily make as her boys were home and that’s all she and Dan ever wished for.
Hayes was admitted to the hospital in Wisconsin January of 2023, due to his ever-sensitive immune system getting the best of him once again. The fight that lies ahead was different, it was harder on his body. Hayes had been on a roller coaster. After 49 days of being intubated. He once again was ready to take on the world thriving and smiling at anyone that entered his room. Hayes began physical therapy to learn how to roll and sit all over again.
During this time Dan and Arica had to make tough decisions with Hayes at the front of their mind. What was best for him? A lung transplant was considered but, in the end, did not quite fit into Hayes’ story. Hayes’ specialist looked into a Potts Shunt. He just wasn’t strong enough to undergo extensive surgery. Dan and Arica decided it was best for them to allow Hayes to tell them what he wanted.
Hayes lost his fight on Sunday May 7th, 2023, to Pulmonary Hypertension and Severe Lung Disease. He was surrounded by mom, dad and brother as he passed peacefully in his mom’s arms. Hayes’ fight was nothing short of a miracle. With every hardship and obstacle, he had to overcome, everyone who loved him was amazed at just how strong he was. Hayes fought a long hard battle and outweighed any doctor’s predictions.
It was unknown what the days would look like for Hayes after his diagnosis of Pulmonary Hypertension. Arica and Dan made sure Hayes felt loved and never alone. He was a momma’s boy, and he loved to cuddle. He wanted to be the loudest one in the room making sure he was heard as he watched Bob Ross in the background.
Hayes is survived by his father, Dan Melheim; mother, Arica Svoboda; brother, Hendrix, grandparents, Chopper (Lisa) Melheim, Sandy (Spencer) Melheim; great grandparents, Deb (Joe) Hinders, Walt (Deb) Svoboda, Willis (Marlene) Krahn; aunts, Ariel Svoboda, Amber (Mindy) DeWall, Ashley Melheim; cousins, Baylie and Aubrielle Gordon, Augustus Rients, Aaliyah Sulflow, Case Spear, Bentleigh Melheim; great aunts, Brandy Hinders, Cindy Sandbo, Julie Krahn, Lynn Fischer, Ranae Beck; great uncles, Brian Hinders, Rick Sandbo, Neal Krahn, Clint Beck and great great uncle, Dave Klein.
He is preceded in death by Joesph Melheim, Ella Melheim, Carolyn Peterson, Jon Peterson, Jennifer Peterson, Richard Melheim, Marilyn Thompson, and Julie Svoboda.
Hayes will be ForeverOne in our heart.