Thalassemia is a genetic blood disorder that causes excessive destruction of the cells responsible for oxygen transport (hemoglobin). The severity of illness can vary depending on the type of disease, but the most serious is known as beta-thalassemia and often begins before a child’s second birthday. Treatment can be less than ideal for anyone—especially small children—and includes bone marrow transplants or frequent blood transfusions in conjunction with medications. If the thalassemia is severe enough, children may need transfusions weekly. That’s a lot for anyone to handle, let alone a child.
As a parent or caregiver, you’ll play a big role in helping your child feel safe and secure during painful or uncertain situations. Here are some ways you can help:
Stay with your child
Your presence can be very helpful as you provide comfort, distraction or an extra pair of hands to medical staff. Try to remain calm yourself and as relaxed as possible. If you get upset, your child will sense that.
Bundle, swaddle, comfort
For very small children, bring a favorite or familiar blanket along and once the procedure is over, wrap them snugly, hold them close and talk or sing to them. This will help to calm them down.
Practice at home
If your child is old enough, you can turn necessary behaviors like sitting still or holding their arm out into a game. Just for a few seconds at a time—see who can hold the position that might be needed to start their IV. Call the game anything your child chooses and then remind them of that position when it’s time to have their procedure.
Talk about the ouch
It’s okay to tell children what’s ahead. If they are old enough to understand, tell them in words they can comprehend that there will be a little “owie” “boo-boo” or “ouchie” but that it will go away soon.
Ask that painful procedures not be done in your hospital or outpatient room
For children, they need to know that they are in a safe zone. Many pediatric medical centers have a procedure room where children can go for the painful stuff. That way, once they are in their room, they know the scary things are over and they can relax.
Give them an “incentive”
Yes it’s a bribe, but it’s fine to offer your child a trip to the park, some ice cream with you or a new book in exchange for their most brave self when a procedure is over. Try to make sure you don’t offer just material items. More quality time with their loved ones is often preferred.
Your risk for passing thalassemia to your children can be identified early. You may be a carrier of the disease but have no symptoms. To find out more, you may consider a simple genetic test. Pathway Genomics offers solutions to identify beta-thalassemia carriers. This information can help you and your partner make informed decisions about family planning. Work with your doctor or genetic specialist to get the most detailed information, learn more about the risk to your children, and get ready for what the future may hold.
Photo credit: wikipedia.org