8 Common Questions After a Child's Sickle Cell Diagnosis

So, your pediatrician just told you that your child has sickle cell disease. Getting this diagnosis can be a total surprise if you had no idea you and your partner were carriers of the condition. It's likely you have many questions, and there is a lot to learn. So, let's go over some important facts and questions you may have.

Is the Newborn Testing Accurate?

Blood work. TEK Image/Science Photo Library/Getty Images

The short answer is yes. Newborn screening is crucial for identifying infants with serious medical conditions, so it is important for the results to be accurate. Rarely the newborn screen is incorrect, but this is the exception to the rule. It is important to treat your child like they have sickle-cell disease until told otherwise.   

How Did This Happen?

Normal red blood cell and sickle cell
Normal red blood cell and sickle cell. SCIEPRO/Science Photo/Library/Getty Images

Sickle cell disease is an inherited condition; it is passed down from parents. Both parents need to be carriers for a child to be born with sickle cell disease. But they both don't have to have sickle (or S) trait. There are other combinations that result in a sickle cell disease like S trait with hemoglobin C trait (hemoglobin SC disease) or S trait with beta thalassemia trait (sickle beta zero thalassemia or sickle beta plus thalassemia).

What Sort of Doctor Should My Child See?

Get a referral to a pediatric hematologist, a physician focused on benign blood disorders which include sickle cell disease. They will be able to educate you about sickle cell disease as well as the current treatment options. Your chid's hematologist will not take the place of your pediatrician; they will work together to help you take care of your child.  

Why Does My Doctor Want to Put My Child on Antibiotics?

Mother and Daughter Picking Up Medications
Mother and Daughter Picking Up Medications. Blend Images - Jose Luis Pelaez Inc/Brand X Pictures/Getty Images

Prior to seeing a pediatric hematologist, your pediatrician may recommend you start giving your child penicillin twice daily. It might sound weird to give your child antibiotics if they are not infected, but penicillin prophylaxis (given to prevent infection) has been life-saving in sickle cell disease. Taking penicillin twice daily until age 5 changed sickle cell disease from something we only saw in children to a chronic illness seen in both kids and adults.  

Is the Condition Fatal?

This is a common question when parents bring their child to my clinic for the first time. Fortunately, in the United States, with current treatments, less than 1 percent of children with sickle cell disease will die before 18 years of age.  

Will My Child Be in Pain All the Time?

Sickle Cells
Sickle Cells. Stocktrek Images/Stocktrek Images/Getty Images

Pain is the most common complication associated with sickle cell disease. Yes, most children with sickle cell disease will experience pain before 5 years of age, but in general, pain is episodic. Additionally, with better treatments like hydroxyurea, children are experiencing significantly fewer pain events.  

Is There a Cure?

Naturally, after finding out your child has a life-altering medical condition you would want to know if there is a cure. Bone marrow transplantation is the only curative therapy available currently. Success rates when using a matched sibling as a donor are extremely good.  

Can I Have More Children With Sickle Cell Disease?

Pregnant Woman in Window
Pregnant Woman in Window. JGI/Jamie Grill/Blend Images/Getty Images

Yes, if you and the same partner have more children, they can have sickle cell disease. When both parents have the trait, they have a 25 percent chance of having a child with sickle cell disease. This risk is for each pregnancy for those two people.  

Take a Deep Breath

Learning your child has a chronic medical condition is life changing. Learning about sickle cell disease and treatment options can significantly improve your child's quality of life.