“Your child has tested positive for strep. A prescription for antibiotics has been sent to the pharmacy for him to start today.” This is a pretty common phone call for a parent to receive when they have small children. Daycares and schools are bacterial war zones and kids are constantly bringing home unwelcomed viral and bacterial guests. Its convenient for doctors to unload this type of medical information over the phone to busy parents. In fact as a mom of two small toddlers I welcome this kid of consideration for my time. When I have a doctors appointment for my 3 and 4 year old I’m anxious just thinking about getting a parking space close to the office and then schlepping the boys into the office and back to the car.
When I took my first HIV test many years ago it was a huge deal to come in to get your results. Even though the results were negative I had my sister there for support. The social worker was present to counsel me before and after the results. This type of support is warranted for these types of life altering medical results. However, this is not the support I received when my 5 week old son was diagnosed with Sickle Cell Anemia. This debilitating disease is known to cause life long pain and numerous health issues which include stroke, organ damage and death.
My car desperately needed to be washed so I stopped at the car wash quickly before heading back to my new baby. Dylan was 5 weeks old and I had just shared a photo of him on my social media.
At the car wash my phone rings and I answered an unfamiliar number not knowing the life altering words I was about to hear. I wonder how many times the woman on the other end has had to deliver heart wrenching news in her career. How does she handle the guilt of literally ripping parents’ hearts straight out of their chests? She said it so matter of factly. You delivered a baby on **. His newborn screen came back positive for sickle cell anemia. We need you to bring him in ………….I had an outer body experience at this very moment. Watching myself react to what literally was the worst possible news that I could hear.
I don’t really recall what I was feeling. The tears started forming automatically and on cue. What? You must be mistaken. He has the trait right? I have the trait. He doesn’t have sickle cell disease? Right?
No-one should receive news like this at a car wash 5 weeks post delivery. This is standard procedure I’m assuming, but I had to come in for my HIV results because of the possible emotional impact of the news. Why is it acceptable for a new mother to receive this type of news on the phone and alone.
I’m sure the employees were wondering what had just happened. They looked at me strangely as I drove off crying hysterically. I’ve never cried so much in my life. My thoughts were scattered all over the place. Literally my pregnancy and delivery 5 weeks ago flashed before my eyes. My sweet 9lb hairy baby, no seriously Dylan was the hairiest baby I had ever seen. He was born with a head full of hair and hair covering his arms and back. I remember laughing in the delivery room at how hairy he was. For the first 4 mos of my pregnancy I swore Dylan was a girl. What does a boy need with all this hair? I thought looking at his head.
I knew I had the sickle cell trait. When I was pregnant with my oldest son I was tested and was informed then I had the trait. My mom told me it was her dad who passed his trait on to his children and now grandchildren. I had no idea Dylan’s father had the trait. I was healthy my entire pregnancy and there were no signs of any issues.
When I got home I cried some more as I nursed my baby who has now been identified as a Sickle Cell Warrior. What would his life be like? Would he be in pain his whole life? Would he die at a young age? There were too many thoughts flooding my mind for me to process any of them. Tears were the only answer.
This story would be completely different if the phone call would have been simply to schedule a new born screen follow up appointment. The diagnosis would still be the same, Dylan would still have Sickle Cell Anemia. However, my questions could have been answered, my fears calmed and I could have been equipped with information on how to protect my sweet little hairy baby.