Our son, Will King Hughes, and his twin sister, Caroline Calloway Hughes, were born on December 1, 2017. Born at almost 36 weeks, both babies were perfect and healthy. We brought them home after two days in the hospital. On December 6, we had a routine check up scheduled in the afternoon with our pediatrician. We fed the babies and were getting them ready to go when Will had a seizure in my arms (I didn’t know at the time that it was a seizure, but I knew something was wrong). When we got to the pediatrician’s office, our doctor immediately sent us to the ER at Wolfson’s Children’s Hospital because both babies had low temperatures and looked yellow from jaundice. We were upset and overwhelmed, but reassured that this was just a little bump in the road and that they would be fine. There was no way that we could have expected what would happen over the next three months. Once we arrived at the ER everything seemed to happen very quickly. Caroline and Will were both put into Giraffe beds to warm up and they were hooked up to a lot of monitors. They had blood drawn, samples taken and at one point Will had an episode of apnea and had to be resuscitated. Caroline went to spend the night on one of the hospital floors for monitoring and Will was immediately taken to the Pediatric Intensive Care Unit where he was joined by his sister the next morning. The next two weeks were traumatic as the doctors tried to figure out what was making our babies so sick while simultaneously trying to keep them alive. They both suffered from multiple organs failing, first weakened heart muscles, followed by failing livers, spleens and kidneys. They both showed abnormal brain activity, Will was having seizures and Caroline had a pulmonary hemorrhage that we thought was going to take her life. Two weeks after we arrived a test came back that finally gave us a diagnosis - enterovirus - a virus with a wide range of symptoms that almost everyone has at some point in their lives. We couldn’t believe that such a common illness could make our babies so sick, but since they had immature immune systems that could not fight against it, the virus attacked every part of their little bodies. Caroline came home from the hospital on January 1, 2018. She successfully weaned from the ventilator that was supporting her breathing, her heart recovered, she learned to eat again and she was able to come home with no medical support. She is a precious miracle. Will had a different purpose. Will showed us strength, courage and perseverance. He brought joy to everyone around him. He was surprising. He defied many odds. He made us truly believe in the miraculous. He did things his way and never fit any medical protocol. He lived many times when everyone said that he wouldn’t. As his parents we experienced more uncertainty, pain and heart break than we ever knew possible, however we did the only thing we knew to do and trusted in Christ and His good, perfect and pleasing will. We claimed that God is good no matter what and asked that He would be glorified in and through our babies. On March 6, 2018 Will passed from my arms into the arms of His loving Heavenly Father. He will be missed every day but we know that he is with our Savior in heaven where he is no longer sick and will live forever with Christ. We cherish every day that we got to spend with Will here on Earth and long for the day we will see him again in Heaven. Until then, we want to honor Will by loving God and loving others by helping children with medical needs just like Will’s. Having two babies unexpectedly stay in the PICU was eye-opening to us and we realized that there are so many sick children who require specialized care all over the world. Our hope is that The Will King Foundation will be a way to support international pediatric heart patients and their families in the name of Christ and memory of our son, Will.
It is always joyful and heartbreaking to retell the story of Will's life and death, but we do it in hopes of encouraging others and sharing Christ's love through our son. You can listen to podcasts episodes in which we share Will's story below.
Will's time on Earth was short - only 96 days - but he made a huge impact! Below is a timeline of what happened during Will's time on Earth with links to our blog telling more details of Will's story.