By Alyce Collins
An engaged couple preparing to say goodbye to their son in the ICU were determined to have him at their wedding, so there was only one thing to do—bring the ceremony to his hospital bedside.At the age of 20 years old, Dominique Barnes gave birth to her son Phoenix in 2016, who was born with multiple congenital heart defects including tetralogy of Fallot, pulmonary atresia, and major aorto-pulmonary collateral arteries. This was due to a chromosome deletion known as DiGeorge syndrome.In the first few months of his life, Phoenix underwent several open-heart surgeries, including one in June 2017 that led to complications from sepsis. It was a terrifying experience for Barnes, of Houston, Texas. She told Newsweek that she was just “living each day, minute by minute.”Barnes and her fiance, Evan, tried to remain hopeful. But, when Phoenix went into septic shock, his organs then started to fail. Doctors estimated he had only 72 hours left to live and urged the family to say their goodbyes.Throughout all that, the couple had been planning their wedding and knew they wanted Phoenix to be there on the big day. As his mom, Barnes said that “nothing was more important” than having him in attendance, and she would do whatever it took to make it happen.The family worked tirelessly over the next 24 hours to relocate their wedding to the ICU so the parents could tie the knot next to their son’s hospital bed on June 14.”We had been planning on getting married prior to Phoenix’s decline, and we always imagined that Phoenix would share that special day with us. We weren’t sure just how much time he had, so we took the opportunity to make the best of a heavy situation,” Barnes continued.”My mother-in-law is an ordained minister and planned to marry us at his bedside. The hospital staff and nurses pitched in by creatively decorating the room with hospital supplies: like blown-up gloves as balloons; banners made from different hospital bags; and a bouquet of flowers made from colored cardboard, since real flowers are not allowed in an ICU.”It was incredibly touching that so many people went to great lengths to make it such a special day for the family. Indeed, Barnes kept the cardboard flowers and still has them to this day.Undoubtedly, it was an emotional day for the newlyweds. They were filled with joy and so grateful to have Phoenix there for the wedding, but there was a heavy sense of grief in knowing that it could be one of his final days.Rather miraculously, Phoenix managed to hold on, and he recovered from septic shock. It was a long and terrifying ordeal, but, six months later, he was finally leaving the hospital after 358 days.”His prognosis was uncertain due to the severity of his heart defects. He was coming home with a feeding tube and tracheostomy that we learned to navigate. There was no time stamp for his prognosis, so we took every day as a blessing and continued to advocate for him and remain optimistic,” Barnes said.Now, at 8 years old, Phoenix is doing well, and his health is stable. The tracheostomy was removed in 2020; he still uses a feeding tube; and his lungs don’t work at full capacity. But his parents love seeing him thrive and refuse to let him feel limited.When Barnes looks back at the videos from her ICU wedding, she is filled with “immense gratitude” for how far her family has come since that day. On her eighth wedding anniversary, Barnes shared some of the footage from that day on TikTok (@raising.phoenix) where she often documents that terrifying first year of Phoenix’s life.The clip went viral with over 189,000 views and more than 31,500 likes on TikTok at the time of writing.Back then, Barnes didn’t know how many hours or days she had left with her son, but now they have made countless happy memories together.Barnes said: “I’m always in awe of everything that Phoenix has gone through, and both my husband and I as well. Going through something like this forever changes your perspective. We are optimistic, we live very much in the moment, and never take anything for granted. We are both forever changed and in the most beautiful and positive ways.”Internet users were so moved by the family’s incredible story of resilience, leading to more than 200 comments on the TikTok post so far.One comment reads: “So proud of Phoenix! And you guys as well!!”Another TikTok user wrote: “He needed that, to be there. Gave him a reason to fight.”A third person replied: “Omg [oh my God] seeing him when he was so little and sick and then when he’s big and happy is so beautiful.”Is there a health issue that’s worrying you? Let us know via health@newsweek.com. We can ask experts for advice, and your story could be featured on Newsweek.