By Desiree Joyner
Mommy to Raiden
Hypoplastic Left Heart Syndrome and 16.1 chromosome deletion
June 24 – August 1, 2024
From the start I always wanted a boy. When I found out I was pregnant in October of 2023, I couldn’t believe it. I was so happy to find out his due date was in July because my birthday is in July. I couldn’t think of a cute boy name and kept throwing out ideas before finally picking out Raiden John. I took his first name from the video game Mortal Kombat and his middle name came from his grandfather.
My excitement turned to heart break when we found out at the 20 week ultrasound that my baby boy that I always wanted would be born with a heart defect and a chromosome deletion. I knew before I got pregnant that I was carrier for a chromosome deletion and was okay with the 50/50 chance my next child would have a chromosome deletion. But it broke my heart to know my son had a significant heart defect too.
My hopes, dreams, and expectations in the very beginning was to see my beautiful baby boy Raiden grow up and define the odds stacked against him. To watch him become what his heart desired. To watch him hit milestone after milestone. To watch him play with his sisters. To watch him beat and overcome all the surgeries that he needed to survive.
The doctors gave me three choices and I chose to carry Raiden to term with the option of heart surgery. I knew no matter what I choose there may be a chance my son would die. That didn’t stop me from wanting to fight for my son no matter what. I knew I wanted to give him the best possible chance at life, no matter the circumstances. Looking back, I wouldn’t change a thing. I would do it all over again.
My birthing experience went well. The nurses and doctors were able to take pictures of my baby boy while I was under. (I had to have a c section for various reasons, the main one being they didn’t want to take the chance of my uterus rupturing as it had with a previous delivery.)
His heart surgery soon after birth went well but he ended up crashing and needing CPR the next morning. I didn’t know the severity of heart defects until the doctors told me how many medications he would be on, even if everything went okay. All the feeding tubes, doctors, visits and more we would have to do for the rest of his life.
However, things took a turn and Raiden passed away at 6:20 pm on August 1st in my arms at in the NICU that he never left. He was buried 11 days later next to his grandfather. I still miss him with all my heart. Everyday that goes by I wonder how things would have been. What would he have been doing? Would his two sisters be showing him all their toys and clothes? Would he be smiling and laughing at all the games, singing, and more that I would have been doing with him? Would he be trying to babble? What milestones would he have been hitting? We will never experience any of that with Raiden.
In the midst of it all, having pictures taken by On Angels’ Wings meant I got the chance to relive the day they were taken. When my beautiful baby boy Raiden passed, I got the chance to go back and look at all the photos taken. I got the chance to admire his beautiful and handsome face, feet, hands, and more. When I look at these photos taken of him, I cry because they turned out perfect and I couldn’t have asked for more. It meant I got the chance to cherish his life and everything during the short time he had on earth. I get to share him with his sisters for the rest of their lives.
The continued support from OAW is unmatched and unbeatable. Not every family going through hardship like this has the support of others to help them out. For example, most of my family are addicts. Growing up I didn’t have that extra support from my parents, grandparents, etc. to be there for me or to even help me with raising my children. It can be exhausting emotionally and physically to do it alone. But having the support from OAW and everything they have done for my family made me feel loved and valued in more than one way. I don’t feel so alone.
No matter the outcome expected for your child, embrace every second you have, every moment. And get the pictures done. They may end up being all you have left, and the only thing you have to share with your other children about their brother or sister as they grow.
