Wednesday, July 7, 2010

Thankful for a name...spherocytosis


After a year filled with doctors, specialists and bloodwork, we finally have a diagnosis for our daughter, Gracelyn. Gracelyn has been diagnosed with hereditary spherocytosis, a blood disease affecting the red blood cells. 

In short, Gracelyn's red blood cells are shaped like a sphere, rather than the traditional donut. Because of this, her blood cells lack the flexibility needed to maneuver through the spleen. Thus, the spleen destroys the odd-shaped cells. A normal person's red blood cells live 4 months--120 days--where as Gracelyn's cells are killed in 3-4 weeks--21-28 days.

Because it seems that Gracelyn has a more severe case of spherocytosis, our hematologist would like to see Gracelyn's spleen removed in the next few months. This puts us in a difficult position...between a rock and a hard place if you will. First, the benefit of removing the spleen is that Gracelyn's blood counts would return to normal, she would have color in her cheeks, she would be more energetic, and the hope is, she would also grow more rapidly. The downside is that she could be more susceptible to various infections. The majority of kids who have their spleen removed are 5+. Gracelyn is 2. Her immune system isn't fully developed. She is really young to go through a surgery.

But, if we choose to wait, she will undergo multiple transfusions, she will continue to feel poorly, and she will continue to grow slowly...possibly stunting her adult height.

We must choose between continuing symptoms, or chancing infection.

But, we are thankful for a name...finally. Now we move on to make difficult decisions. We appreciate your prayers and encouragement as we weigh our options. And we have decided that no matter our decision, we won't second guess. We will rely on our God...and the intuition he gave us. We will listen to our healthcare providers, but we will always be the advocate for our daughter. We have learned over the past year that doctors make mistakes. They are human. And we must always ask questions...even if it is questioning a doctor's opinion. 

It takes guts to do that. They have medical degrees adorning the walls. They are educated. But, Gracelyn is OUR daughter. We want what is best for her. And to give her that, we must rely on her Creator. We must listen for His voice, no matter the advice and recommendations...and the medical degrees.

To learn more about spherocytosis, visit: https://www.childrens.com/CCBD/hereditary-spherocytosis/ 
We would also like to connect with other parents of children with spherocytosis. If you are a parent of a child with the disease, or you know someone who is, please let us know. We would love a chance to connect. We also welcome your questions, so have at it.






4 comments:

  1. I'm glad you finally have some answers even though they are difficult ones. I will be praying that the Lord guides your decisions.

    ReplyDelete
  2. Glad you finally have some direction and answers. We'll be praying for peace and wisdom as you make tough choices ahead.

    ReplyDelete
  3. I think my daughter may have this....can you personally email me? shannonbiancamano@gmail.com thank you so much!!!!

    ReplyDelete
  4. I just came across this post and thought that I would chime in. I know that this was posted a few years ago but someone may find this helpful. When I was three I was diagnosed with Spherocytosis. They tried to wait to have my surgery but they couldn't wait any longer because of my deteriorating health. When I was four I had my spleen removed so that I could start living a normal life. I am now 26 years old and things are fine. I did have a rough time with sickness in my younger years but I am as healthy as anyone else that I know (More so in some cases). It's interesting to read about someone else who has the same thing that I have and around the same age that I was. Hope all is going well. bmbyars@gmail.com

    ReplyDelete