SEPSIS

If you have Heterotaxy with Polysplenia, Asplenia, Functional Asplenia or any spleen abnormalities you need to be careful with sepsis. A fever plan is extremely important and a must need for children with spleen abnormalities. Children with spleen abnormalities may not have splenic function. Certain signs of sepsis are low blood pressure and fever. For example, a high fever for Chloe is 102. If Chloe reaches a fever of >102 and has signs of a serious bacterial infection, she should have a CBC, Blood Culture, and ceftriaxone x 48 hours. If your child shows sign of having sepsis take them immediately to an ER and bring your letter so they can treat your child at once. I can only stress to all you how important for our children to have the right medical care when sepsis is involved. These children sometimes are failed by our medical community and are not taking serious.

One parent in a support group I belong with lost her little boy due to septic shock. It is so important for our medical community to understand really what having a child with Asplenia or Polysplenia is. I am a firm believer of having Chloe on an Amoxicillin Prophylaxis. However, this is only a prevent measure but it is not guaranteed. Your child’s doctor really needs to understand what Heterotaxy means and the syndromes that go along with it. Your child’s life may one day depends on it.

I am upset over the loss of this little boy. I cannot not even begin to imagine what this mother is going through. My heart goes out to her and her family. As a mom she did everything right but the medical community did not do enough to protect her little boy. Parents please make sure that you have a fever plan for your child. You should also make sure that medical alert has a copy of this letter. You can also make sure other family members or close friends have a copy of the letter. You can also keep a copy of it in your car or pocket book. Your child's school should also have a copy of this and every teacher, teacher’s assistant, nurse or office staff should be aware of your child condition.

John Travolta said that we should treasure everyday that we have with our children because we never know what tomorrow may bring.