If your newborn or young baby has been diagnosed with Sickle Cell Disease, you have questions and concerns that are better asked of a medical specialist with extensive knowledge and experience with the condition, who can also consult and work with your child's pediatrician.
Every child born in the USA is tested for Sickle Cell Anemia, a form of Sickle Cell Disease, known for red blood cells having a 'C' shape, like an old fashioned farming tool, the sickle. Symptoms may arise in the first few months of life, and treatments are available in the first few weeks that reduce the risk of side effects that cause pain and physical damage in the child's first few years.
Families may find surprisingly little up to date information or helpful discussions and a great deal of sensationalized misinformation about Sickle Cell Disease in their communities, and among medical professionals who are unfamiliar with the disease.
You will stand as your child's first line of defense against the challenges of Sickle Cell, being aware of any new symptom, complication or difficulty that needs to be reported to the doctor and treated at home or in a medical setting. Some of the care guidelines are simple and practical, like making sure your baby or child has lots of fluids, gets plenty of rest, and is protected from extreme temperatures.
Because immediate and specific medical intervention may often be required during the newborn period and infancy to give your beautiful baby the best options and opportunities for better health with less pain, an early diagnosis is extremely important. Fortunately there are knowledgeable blood specialists and sickle cell clinics throughout the United States who are dedicated to helping children experience their best quality of life.
When a baby or child is diagnosed with Sickle Cell disease, medical professionals immediately begin treatment to manage the symptoms and any severe pain associated with the disease, as well as to avoid complications that can be debilitating or life-threatening. Your child may require daily doses of antibiotics, and regularly scheduled immunizations will be of greater importance. Some children who have severe complications require blood transfusions to replenish red blood cells. Our children deserve the best possible interventions, comfort and support.
Sickle Cell Disease is a genetic anomaly that is more common in families with certain ethnic backgrounds. The original gene mutation gave individuals who had one sickle hemoglobin gene a greater likelihood of surviving a deadly form of malaria epidemic in parts of Africa, the Mediterranean basin, the Middle East, and India.
Carrying one sickle cell gene does not usually cause difficulty but when a child inherits a gene for it from both parents they may experience anemia due to the short life of sickle cell hemoglobin cells (ten to twenty days rather than 120 days); and pain, due to the difficulties of the somewhat stiff and odd shaped cells to pass through small blood vessels, that also is a risk to organs and vital tissues.
An excellent simple explanation of the cause and different varieties of sickle cell disease can be found online at Kids Health that includes a description of terms like: hemoglobin SS disease (sickle cell anemia)as well as 'hemoglobin SC disease' and 'hemoglobin S beta thalassemia' that are caused by inheriting a different kind of sickle cell gene from each parent.
A New York Times article reports that newborns in all 50 states have been routinely tested for sickle cell disease since 2006. Symptoms especially dangerous in unscreened babies and children include high fever at three to six months old due to the bacterial infection *pneumococcus; mild to severe anemia; acute chest syndrome; aplastic crisis; painful swelling of the hands and feet; severe bacterial infection; severe pain, especially when dehydrated or in cold weather; enlarged spleen; and stroke.
Individuals who inherited only one gene from a parent, known as the Sickle Cell Trait, may be at risk for complications during extreme physical exertion, lack of oxygen (high altitudes), dehydration, or temperature extremes. Tests are available to diagnose sickle beta plus thalassemia and other blood disorders that can cause an individual to show symptoms of Sickle Cell Disease with only a Sickle Cell Trait.
Research, information and support for children and families affected by Sickle Cell has never been greater than it is today. In recent years a genetically engineered strain of mice that show some characteristics of sickle cell disease was introduced so that researchers have a better chance of finding treatments and a cure.
In 2011, many treatments were being studied for effectiveness in reducing complications and symptoms, and a possible cure, including the use of fetal hemoglobin, Clotrimazole, bone marrow transplantation, and gene therapy. See: The ASCAA - What is the Future of Sickle Cell Anemia Treatment for more information. Always follow up information or advice you may have found via magazine articles or websites with your child's medical team. Advice from individuals who have grown up with Sickle Cell disease and recommendations from their families may not be appropriate for your son or daughter, but may provide another set of questions or concerns that should be shared with professionals at your child's specialty clinic or with an experienced doctor who is consulted for a second opinion.
In 2014, new recommendations for treatment of Sickle Cell Disease emphasize use of drug hydroxyurea and transfusion treatments, in guidelines based on work by an expert panel using more than 12,000 scientific articles, according to an article in Health Day. These guidelines should be shared with medical professionals involved in children's care, and are very important for teens and adults living with Sickle Cell Disease. Some recommendations listed there include reducing the risk of infection by prescribing daily antibiotics, pneumococcal vaccine at six weeks of age, and annual tests known as a 'transcranial Doppler' from the age of two years, to reduce the risk of stroke in children through transfusion therapy.
It is critically important for school personnel, coaches, extended family and other caregivers to be aware of the small accommodations children with Sickle Cell disease need to minimize the risk of complications, and manage a pain crisis when it happens. Because Sickle Cell is an invisible disability, lack of awareness and skepticism about the seriousness of the condition can be as difficult as the diagnosis itself. Families and other advocates work every day to make sure that children growing up with Sickle Cell Disease today have the best possible opportunities to live strong lives, managing the effects where there is help, and showing us their true potential day by day.
Browse at your public library, local bookstore or online retailer for books about Sickle Cell Disease, like Hope and Destiny: A Patient's and Parent's Guide to Sickle Cell Anemia
NIH scientist transforming treatment of sickle cell disease
Understanding Sickle Cell Anemia
Tips for Teachers, Nurses, and School Administrators - Sickle Cell Disease
CDC Booklet for Teachers: Tips for Supporting Students with Sickle Cell Disease
Specific Problems: Sickle Cell Trait
New York Times: Making Sickle Cell Disease a Manageable Illness
Ten years of Living With Sickle Cell
Ten years of Living With Sickle Cell
A mom's blog on "Living with sickle cell"
Vallejo blood drives to help sickle cell patients
NATA Re-Issues Guidelines On Reducing, Preventing and Treating Exertional Sickling in Athletes
Malvern's TAIBU spreads awareness on sickle cell disease
South Florida Girl cured of Sickle Cell
Bone Marrow Transplant from Perfect Match Brother
Chicago Woman Cured of Sickle Cell Disease
First Midwest patient to receive a successful stem cell transplant without chemotherapy
Dialing down sickle cell disease
Study in mice says dialing up fetal hemoglobin may bring new therapies
GSCDN video: An introduction to the Global Sickle Cell Disease Network
This network is part of the Programme for Global Paediatric Research (PGPR) based at The Hospital for Sick Children (SickKids) in Toronto, Canada. The Network is a community of sickle cell disease clinicians and scientists committed to working together to advance clinical care and further research in sickle cell disease.
Starlight Children's Foundation
Sickle Cell Slime-O-Rama Game
Sickle cell disease is a hereditary, life-shortening ailment
Jena Simon of Mount Sinai says the blood disorder is treated with hydroxyurea and bone marrow transplant
Drug helps prevent sickle cell pain even in young children