The hematology program at St. Jude provides expert care and treatment for children with blood disorders. We also ensure you have compassionate support you need as your family adjusts to life with a blood disorder.
What to expect when your child needs treatment for a blood disorder
St. Jude specializes in treating and improving the lives of children with the following blood disorders:
Individualized long-term treatment plan
St. Jude treats many patients from birth through 18 years old. As your child grows, we help treat his or her disease and ensure a healthy, happy life. We also help your whole family to learn how to approach and overcome challenges related to your child's disease.
After your child is accepted for treatment, St. Jude matches your family with a team of experts. Your multidisciplinary team will have expertise in many areas. We will work with you to create an individualized treatment plan for your child. This will help you treat and manage your child's blood disorder.
Your child's treatment plan will be made specifically for his or her needs. It will include information from you, your child, your medical team, your support staff and other specialists as needed.
A multidisciplinary care team
Your child will have a dedicated team of doctors, nurses and support staff specially trained to treat children with blood disorders. You will also have a case manager to help coordinate your child's care. Together, those care team members work with you to support your family and answer your questions.
Here are some of the team members your child may have in addition to your primary doctors:
- Hematology nurses, nurse practitioners, physician assistants and nurse case managers — to provide in-patient care and training on how to keep your child safe and healthy at home
- Physical therapists — to help children develop and rehabilitate their muscles and motor skills so they can live and play safely and happily
- Social workers — to support your family and help you access community resources
- School specialists — to coordinate with and educate your child's school and teachers about blood disorders and safe environments for children who have them
- Child Life specialists — to help reduce stress and anxiety for your child, his or her siblings, and the rest of your family
- Genetic educators — to teach your family how certain blood disorders are inherited. You may also be able to test if other members of your family may have a blood disorder or gene that causes blood disorders
- Nutritionists — develops recommendations for foods to help keep your child strong and healthy
- Dentists — to address how your child’s disease affects his or her teeth, or to provide dental care as needed
Outpatient care at home
Most children at St. Jude are treated as outpatients. This means they do not spend the night at the hospital. They only have to be at the hospital for tests, check-ups and treatments. When your child has a blood disorder, your care team will craft a treatment plan that includes regular care visits.
Inpatient care at St. Jude
During your time at St. Jude, your child might be admitted as an inpatient. The Hematology Inpatient Unit is on the second floor of the Patient Care Center. Your child might need to visit for:
- Pain that has become hard to control
- Low blood counts or fever
- Excessive bleeding
- Severe fatigue or tiredness
Every child staying as an inpatient at St. Jude has a full team providing care. This team includes a nurse, patient care associate, nursing unit coordinator, dietitian, pharmacist, Child Life specialist, medical resident or nurse practitioner, medical fellow, clinical nurse specialist and attending doctors.
Genetic counseling and testing
If your child has a genetic blood disorder, you or other family members could carry the gene. Many blood disorders are inherited through family members. St. Jude offers your family resources to help.
Some examples of genetic blood disorders include sickle cell disease, hemophilia and von Willebrand disease. If you have common traits of a genetic disease and you want to know more about what it means for your family, a St. Jude genetic educator can help. Some of the things genetic educators at St. Jude can do include:
- Explain and advise your family about risks associated with inheriting certain genes
- Offer you genetic evaluation, testing and counseling
- Help your family understand who might be a carrier and how the gene is passed on
- Outline potential impacts on the health of future children or grandchildren
- Give you and your family educational materials to take with you and share
Resources and support
St. Jude offers many resources and types of assistance for families and patients with blood disorders. These include:
- Accommodation assistance, such as transportation, meals, work excuses and housing, if necessary. Your social worker, in conjunction with your nurse case manager, will help with these arrangements as needed.
- Patient support groups. St. Jude has several patient support groups to help with emotional issues involved with having and caring for a child with a chronic illness.
- Patient family-centered care and a Family Advisory Council to incorporate parents and patient perspectives in treatment decisions.
St. Jude also offers many online resources for children with blood disorders, their caregivers, teachers and families. These include:
- Educational materials about sickle cell disease, treatment and healthy lifestyle choices
- Patient Education Resources: an educational series for patients and their families.
- Infection Tips: information for for patients and parents to help prevent and avoid infection
- Medicines: information about medicine at St. Jude
- The Sickle Cell Transition E-Learning Program (STEP): videos to help teens with sickle cell disease successfully transition to adult medical care.
Success through Academics, Resources and Research (STARR) Program
The Success through Academics, Resources and Research (STARR) program has three teachers who work closely with the school system as academic coordinators in order to develop educational plans for children with sickle cell disease and blood disorders and to help patients enroll in IEP or 504 plans to help them receive school accommodations as necessary.