Bone Marrow Failure In Children

GENERAL INFORMATION:

What is bone marrow failure?

• Bone marrow failure happens when your child's bone marrow does not produce blood cells. Bone marrow is the spongy red tissue inside your child's bones. It makes red blood cells (RBC), white blood cells (WBC), and platelets. Red blood cells carry oxygen to organs and tissues of your child's body. White blood cells help your child's body fight infection by attacking and killing germs. Platelets stop the bleeding when your child is cut or injured.
  
  
• Bone marrow failure may be inherited (something your child is born with) or acquired (something that happened after birth). Inherited bone marrow failure is most commonly seen in young children. Acquired bone marrow is most commonly seen in young adults. Both types may lead to anemia (low RBC count).

What causes bone marrow failure? The cause of most cases of bone marrow failure is unknown. Inherited bone marrow failure is caused by a defect in your child's genes. Genes are little pieces of information that tell the body what to do or what to make. Inherited bone marrow failure may be caused by diseases such as Fanconi's anemia. Acquired bone marrow failure, such as aplastic anemia, is caused by something that happened after your child was born. It may be due to any of the following:

• Being around chemicals a lot, such as benzene.
  
  
• Being exposed to high doses of radiation or chemotherapy.
  
  
• Infections caused by germs, such as bacteria or viruses.
  
  
• Taking certain medicines, such as analgesics or antibiotics.
  
  
• Immune system problems. The immune system is that part of your child's body that fights infection. His immune system may be weak or it may be attacking his bone marrow.

What are the signs and symptoms of bone marrow failure? Signs and symptoms of bone marrow failure vary, but bleeding is the most common symptom. Your child may bruise easily, and have nose, gum, or skin bleeding that takes longer than normal to stop. Blood may also be seen in the urine and stools (bowel movements). Birth defects are common in children with bone marrow failure. Your child may also have any of the following:

• Fever, fatigue (feeling tired most of the time), shortness of breath.
  
  
• More infections than normal, or colds or infections that do not get better or keep coming back.
  
  
• Mouth and tongue ulcers (sores), tooth decay, tooth loss, and nail loss or deformed nails.
  
  
• Poor growth, a small head, shorter height than expected, digestive problems, or greasy stools with a foul (bad) odor.
  
  
• Premature (early) graying of hair or more hair loss than usual.
  
  
• Skin may appear pale, or have coffee-colored spots or pinpoint red marks.

How is bone marrow failure diagnosed? Your child's caregiver may ask you questions about your child's medical history. This may include past diseases and medicines your child may be taking. Your child may have any of the following:

• Blood tests: Your child may need blood taken for tests. The blood may be taken from your child's arm, hand, finger, foot, heel, or IV. Blood tests can give caregivers more information about your child's health condition. Your child may need to have blood drawn more than once.
  
  
• Bone marrow biopsy: A small sample of your child's bone marrow is taken out and sent to a lab for tests.
  
  
• Genetic tests: These tests show if a hereditary disease is causing your child's problem.

How is bone marrow failure treated? Treatment for bone marrow failure depends on the cause, and how severe (bad) the bone marrow failure is. Diagnosing and treating bone marrow failure as soon as possible may decrease or relieve symptoms, and prevent more medical problems. Your child may need any of the following:

• Blood transfusion: This is donated whole blood, or parts of blood your child may get through an IV. You may be worried that your child will get AIDS, hepatitis, or West Nile Virus from a blood transfusion. The risk of this happening is rare. Blood banks test all donated blood for AIDS, hepatitis, and West Nile Virus. If you refuse a blood transfusion for your child, his condition may get worse, and he may die.
  
  
  • You may be asked to help find blood donors. A close family member may be able to donate blood or bone marrow. Family members may not be able to donate blood if there is the possibility your child may need a bone marrow transplant. Ask your child's caregiver for more information about finding donors.
    
    
  • Platelets are donated by hemapheresis. Blood is taken from the donor's vein through an IV tube and put into a blood-separating machine. The platelets are removed and the rest of the blood is given back to the donor through the IV. The donor's body makes new platelets within one to two days. Your child is given the donor's platelets through an IV.
  
  
• Medicines:
  
  
  • Hematopoietic growth factors: These medicines are used to help your child's bone marrow produce more blood cells. They may include androgens, erythropoietin, G-CSF, and GM-CSF.
    
    
  • Immunosuppressives: Immunosuppressive medicines help prevent the body from attacking its own bone marrow. This may allow the bone marrow to make more blood cells.
    
    
  • Steroids: Steroid medicine may be given to help prevent the body from attacking its own bone marrow. This may allow the bone marrow to make more blood cells.
  
  
• Transplantation:
  
  
  • Doner bone marrow transplant (BMT): A bone marrow transplant is where your child's damaged bone marrow is replaced with healthy marrow. Your child is usually given bone marrow from someone who is not a family member. The bone marrow transplant is given to your child in an IV while he is in the hospital. Ask your child's caregiver for more information about BMT.
    
    
  • Doner peripheral blood stem cell transplant (PBSCT): Bone marrow has many stem cells in it. Stem cells are the part of the bone marrow that make or change into blood cells. During a PBSCT, stem cells are put into your child's body. To do this, blood is given by a person who has blood that is similar to your child's blood. This may include a parent, brother, or sister who does not have your child's disease. The blood is then put through a process called apheresis. During apheresis, stem cells are taken out of the blood. The stem cells are then put into your child's body through an IV. The stem cells go into your child's bone marrow, where they grow and become blood cells.

What can I do to help my child?

• Ask your child's caregiver before giving any medicines or herbal supplements to your child. Do not give your child aspirin, ibuprofen, or antihistamines, as these medicines may cause bleeding. Certain medicines may cause problems for your child if he is exposed to sun without proper protection. Protect your child's skin from the sun by applying sunscreen to your child that has an SPF (sun protectant factor) of 30 or higher. Ask your child's caregiver for other ways to protect your child's skin from the sun.
  
  
• Do not allow your child to join in rough play or contact sports. These activities may cause bruising or a head injury, and lead to serious bleeding problems. Allow your child to rest and sleep as much as he needs.
  
  
• Give your child a soft-bristled toothbrush, and teach him to brush his teeth slowly and gently. Doing this may help prevent bleeding gums. Have your child use lip balm to prevent his lips from drying and cracking, and apply lotion to his skin to prevent scratching and skin tears.
  
  
• If your child is having hard, dry stools that are difficult to pass, he may be constipated. Constipation can cause bleeding in your child's bowel movement. Give your child fresh fruit and plenty of water to drink to avoid constipation. Ask your child's caregiver for more information about preventing and treating constipation.
  
  
• Try to keep your child away from people who are sick. This decreases your child's chance of getting sick or getting an infection. Ask a caregiver if your child should get shots to keep him from getting the flu and other illnesses.

Where can I find support and more information? Accepting that your child has bone marrow failure is hard. Your child and those close to your child may feel scared, depressed, or angry. These are normal feelings. Talk to your child's caregiver, family, or friends about your and your child's feelings. Contact the following for more information:

• Aplastic Anemia and MDS International Foundation, Inc.
  P.O. Box 613
  Annapolis, MD 21404-0613
  Phone: 1-800-747-2820
  Web Address: http://www.aplastic.org
  

• Fanconi Anemia Research Fund, Inc.
  1801 Willamette St., Suite 200
  Eugene, OR 97401
  Phone: 1-541-6874658
  Phone: 1-800-8284891
  Web Address: www.fanconi.org
  

CARE AGREEMENT:

You have the right to help plan your child's care. To help with this plan, you must learn about your child's health condition and how it may be treated. You can then discuss treatment options with your child's caregivers. Work with them to decide what care may be used to treat your child.

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