At Lehigh Valley Reilly Children’s Hospital, we know how difficult receiving a sickle cell disease diagnosis can be for your child and family. Our team of experts is dedicated to supporting you and your child through every stage of care, offering many of the latest treatments and a network of support services.
What is sickle cell disease?
Sickle cell disease is an inherited blood disorder characterized by defective hemoglobin (a protein that carries oxygen throughout the body), which affects red blood cells.
Normal red blood cells are smooth, round and flexible, which allows them to move through blood vessels easily.
Sickle cell disease causes red blood cells to be stiff, sticky and shaped like the letter “C.” Unlike healthy red blood cells, these sickle cells cluster together and have trouble moving through blood vessels. This can cause a blockage, which stops the movement of oxygen-carrying blood throughout the body and can lead to pain, stroke and other serious health complications.
Diagnosing sickle cell disease
Sickle cell disease is most often diagnosed through newborn screening blood tests, which are standard for all babies born in Pennsylvania.
If your child has been born with sickle cell disease, they have inherited it from both of their parents (who either have the disease themselves or are carriers of the sickle cell trait).
Your child could also have been born as a carrier of the sickle cell trait without having the disease.
Managing your child’s sickle cell disease
If your child is diagnosed with sickle cell disease, they will need care throughout their lives to support their well-being and prevent complications.
While most cases of sickle cell disease are incurable, certain treatments can help manage your child’s pain and prevent infection and stroke.
Common treatments and preventative measures your child may undergo include:
- Taking penicillin daily in early childhood and receiving additional vaccines to prevent infection.
- Receiving blood transfusions and medications to prevent and treat the complications of sickle cell disease. One specific medication, hydroxyurea, is widely used to prevent complications in children with severe sickle cell disease. If your child qualifies for this medication, they will likely begin taking it before age 2.
In addition, if your child has severe sickle cell disease, they may qualify for a stem cell transplant.
Sickle cell disease specialists at Lehigh Valley Reilly Children’s Hospital
The team of experts at the Children’s Cancer and Multipurpose Infusion Center at Lehigh Valley Reilly Children’s Hospital has vast experience caring for children with sickle cell disease.
Our pediatric hematologists/oncologists and nurses will provide personalized care for your child and will follow them closely as they grow up. We will also work to educate your child on their condition and the steps they can take to prevent pain crises and infections.
We also work closely with the Children’s Hospital of Philadelphia, and if your child may be eligible for a stem cell transplant, we will refer you to their transplant program for evaluation.
Support services
At Lehigh Valley Reilly Children’s Hospital, your child and family members will have access to a dedicated social worker and community health worker. These individuals will help you identify and access a variety of resources, including transportation assistance and resources for emotional and financial well-being.
Lehigh Valley Reilly Children’s Hospital is also home to the area’s only certified child-life specialists, who help kids receiving medical treatment by offering opportunities for stress relief and relaxation (as well as distractions to make procedures easier).
Your children mean the world to you
At Lehigh Valley Reilly Children’s Hospital, we take the very best care of them.