September is Sickle Cell Awareness Month, an opportunity to improve understanding of a condition that affects approximately 100,000 people in the United States. For families raising a child with sickle cell disease, awareness means more than recognizing the name. It means understanding why symptoms occur, knowing which warning signs require immediate care and recognizing how preventive treatment can protect a child’s health.
Sickle cell disease is a lifelong inherited blood disorder. It is not contagious, and it is not caused by anything a parent did during pregnancy. Although it is more common among people with ancestry from sub-Saharan Africa, it can also affect people with Hispanic, Mediterranean, Middle Eastern, Indian and other backgrounds.
At Sandy Springs Pediatrics, we want families to have clear, factual information about sickle cell disease in children and the role pediatric care can play in supporting their health.
What Is Sickle Cell Disease?
Red blood cells contain hemoglobin, a protein that carries oxygen throughout the body. Healthy red blood cells are typically round and flexible, allowing them to move easily through blood vessels.
In sickle cell disease, abnormal hemoglobin can cause some red blood cells to become rigid, sticky and curved into a shape resembling a sickle or crescent. These cells can break apart earlier than healthy red blood cells, contributing to anemia. They may also block blood flow through small blood vessels, preventing oxygen from reaching tissues normally.
These blockages can cause episodes of severe pain, known as pain crises or vaso-occlusive crises. Over time, reduced blood flow may also damage organs and increase the risk of serious complications.
Sickle cell disease includes several related conditions. Sickle cell anemia, also called hemoglobin SS disease, is one of the most common and often most severe forms.
Sickle Cell Disease and Sickle Cell Trait Are Not the Same
Sickle cell disease and sickle cell trait are related, but they are not interchangeable.
A child with sickle cell disease inherits an abnormal hemoglobin gene from each biological parent. A person with sickle cell trait inherits one sickle cell gene and one typical hemoglobin gene.
People with sickle cell trait usually do not experience the symptoms or complications of sickle cell disease. However, they can pass the sickle cell gene to their children. Genetic counseling can help parents understand how sickle cell trait may affect future pregnancies.
If both biological parents have sickle cell trait, each pregnancy has:
- A 25% chance that the child will have sickle cell disease
- A 50% chance that the child will have sickle cell trait
- A 25% chance that the child will inherit neither
These probabilities apply separately to every pregnancy. The outcome of one pregnancy does not change the probabilities for the next.
How Is Sickle Cell Disease Diagnosed in Babies?
Babies born in the United States are routinely screened for sickle cell disease as part of newborn screening. A few drops of blood are collected from the baby’s heel and tested for several serious health conditions.
Newborn screening allows sickle cell disease to be identified before symptoms begin. If the screening result suggests sickle cell disease, additional blood testing is needed to confirm the diagnosis. A child with a confirmed diagnosis should begin care with a pediatric hematologist, a physician who specializes in blood disorders.
Early diagnosis is important because preventive treatment can begin during infancy, before certain complications develop.
Common Sickle Cell Symptoms in Children
Symptoms vary considerably from one child to another and may change over time. They often begin during the first year of life as fetal hemoglobin levels decrease.
Possible symptoms include:
- Anemia, which may cause fatigue, weakness or pale skin
- Yellowing of the skin or whites of the eyes, known as jaundice
- Painful swelling of the hands or feet, particularly in babies and young children
- Episodes of severe pain in the chest, abdomen, back, arms or legs
- Frequent infections
- Delayed growth or puberty
- Vision problems
A child may appear well between pain episodes. This does not mean that ongoing treatment or monitoring is no longer necessary. Sickle cell disease can affect the spleen, lungs, brain, kidneys, eyes and other parts of the body, sometimes before outward symptoms become apparent.
When Does a Child With Sickle Cell Disease Need Urgent Care?
Because sickle cell disease can cause serious complications, families should follow the emergency plan provided by their child’s hematology team. Symptoms that require prompt medical attention include:
- Fever
- Chest pain, coughing or difficulty breathing
- Sudden weakness, facial drooping, difficulty speaking, confusion or seizures
- Severe headache
- Unusual sleepiness or difficulty waking
- A rapidly enlarging abdomen
- Severe pain that cannot be controlled with the child’s prescribed plan
- Signs of dehydration
- Sudden paleness, weakness or extreme fatigue
- An erection that is painful or lasts longer than expected
Fever in a child with sickle cell disease can signal a serious bacterial infection and should not be managed as an ordinary childhood fever without medical guidance. Parents should ask the child’s hematology team which temperature requires immediate evaluation and where the child should be taken.
Chest pain, fever, coughing and difficulty breathing may be signs of acute chest syndrome, a potentially life-threatening complication requiring urgent medical care. Stroke is another serious risk. Sudden neurological symptoms should always be treated as an emergency.
Preventive Care Helps Reduce Complications
Children with sickle cell disease need coordinated care involving a pediatric hematologist, primary pediatrician and, when necessary, other specialists.
Preventive care may include:
- Daily penicillin during early childhood to reduce the risk of serious bacterial infections
- Staying current on routine and additional recommended vaccinations
- Regular blood tests and medical examinations
- Transcranial Doppler ultrasound screening to evaluate stroke risk in children with certain forms of sickle cell disease
- Eye, kidney and other organ monitoring as the child gets older
- Individualized plans for managing pain at home and determining when hospital care is needed
Adequate hydration, regular sleep and avoiding extreme temperatures may help reduce some triggers, but healthy habits cannot eliminate the disease or prevent every pain crisis. A child experiencing a pain episode should never be blamed for causing it.
How Is Sickle Cell Disease Treated?
Treatment depends on the child’s type of sickle cell disease, age, symptoms and history of complications.
Hydroxyurea is an oral medication commonly used to treat sickle cell disease. It increases fetal hemoglobin, which can reduce the sickling of red blood cells. In children, hydroxyurea can reduce pain crises, acute chest syndrome, hospitalizations and other complications. It is often offered to infants with sickle cell anemia beginning at approximately 9 months of age.
Some children may need blood transfusions to treat severe anemia, acute chest syndrome or other complications. Regular transfusions may also be recommended for children found to have an elevated risk of stroke.
A blood and bone marrow transplant can cure sickle cell disease in some patients, but it requires a suitable donor and carries significant risks. It is not the appropriate treatment for every child.
New Progress in Sickle Cell Treatment
Treatment options for sickle cell disease have expanded significantly.
In December 2023, the U.S. Food and Drug Administration approved the first gene therapies for certain patients with sickle cell disease. These treatments use a patient’s own blood-producing stem cells and address the disease at its genetic source.
In July 2026, the FDA expanded approval of the gene-editing therapy Casgevy to include certain children ages 2 and older who experience recurrent vaso-occlusive crises. The treatment was previously approved for patients ages 12 and older.
Gene therapy is an intensive medical process that requires chemotherapy-like conditioning before the modified cells are returned to the body. It also carries potential short- and long-term risks. Eligibility must be determined by a specialized sickle cell treatment team. These therapies are not replacements for the daily preventive care that most children with sickle cell disease currently receive, but they represent meaningful progress toward potentially curative treatment for more patients.
Supporting Children With Sickle Cell Disease in Sandy Springs
Sickle cell disease can affect school attendance, physical activity, sleep, emotional health and daily family life. A child may need an individualized school health plan that explains medication needs, hydration, bathroom access, activity modifications and what staff should do during a pain episode or emergency.
Children with sickle cell disease can participate in school, sports and other activities when their medical needs are understood and appropriate precautions are taken. Activity recommendations should be individualized with the child’s healthcare team.
Sandy Springs Pediatrics works alongside families and pediatric specialists to support the whole health of children with chronic medical conditions. Your child’s pediatrician can help monitor growth and development, provide recommended vaccinations, evaluate common illnesses, coordinate specialist care and help families determine when symptoms need urgent attention.
During Sickle Cell Awareness Month and throughout the year, our pediatric team is here to provide informed, compassionate pediatric care for families in Sandy Springs and surrounding Atlanta communities.