“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.
Woow…..😢 so touching I probably would have done the same thing. It’s the unknown that’s scary. If you were in the doctor office all that question in your head would be answered vs spending the entire day wondering and stressing.
LikeLiked by 1 person
Wow you did a fantastic job of expressing your emotions and confusion that surrounds this type of news. I’m glad you told your story without sugar coating it. I look froward to speaking too you when the time is right. Thanks again for sharing.
LikeLiked by 2 people
Thank you so much for sharing your story. I’m so sorry and agree that there was a better way to communicate that information to you. Sometimes I feel like doctors and medical professionals are desensitized to this kind of thing since they see it so often, not realizing that it’s the first time for their patients. Much strength to you and your family! ❤
LikeLiked by 1 person
They are desensitized and could use better bedside manner when delivering news like this.
LikeLike
Wow…..the fear that grips you, from such a phone call! So scary…. 😱😱
LikeLiked by 1 person
OMG!!! IDK how to respond!
LikeLiked by 1 person
Exactly how I felt. Like this must be the wrong number ma’am. 😦
LikeLike
I am so sorry about this and thanks for sharing this
LikeLiked by 1 person
I hope that things will get much better, thanks for sharing it!
LikeLiked by 1 person
Thank you. They are better.
LikeLiked by 1 person
This is a lesson for all medical professionals to be more empathetic, especially to new moms about the health of their children. They left you in confusion with sharing a diagnosis without any follow up information regarding the disease. I’m sure from the time you go the phone call until you took him to the follow up seemed like an eternity. I think it is great that you are bringing attention to this issue. You should write an article in a parenting magazine.
LikeLiked by 1 person
I never thought about parenting magazine. Thank you so much for the idea. I will consider.
LikeLike
so sorry you went though this, thank you for sharing.
LikeLiked by 1 person
Fully recommended for every mother… Please read this one
LikeLiked by 1 person
I have never heard something so awful in my life. They aren’t supposed to give you results over the phone like that.
LikeLiked by 1 person
Felt sad reading your blog..I can feel that you’re a strong woman though. You’ll get through this challenge and I wish for Baby Dylan’s good health.
LikeLiked by 1 person
So sorry that this happened to you! Medical professionals get so desensitized at times, that they think nothing of doing something like that.
LikeLiked by 1 person
so sorry for you to go through this. I totally understand from a parent point of view. You have to be strong for him. Good luck!
LikeLiked by 1 person
You are brave to show your emotions and real. Words are not enough. But your love to your kid is so strong.
LikeLiked by 1 person