If your child has hemophilia or another bleeding disorder, leaving them in the care of a babysitter, grandparent, or friend can feel daunting.
While a bleeding disorder does call for some extra planning, your child can still enjoy playdates, age-appropriate activities, and time with trusted family members and friends, says Angela Mamangun, BSN, R.N., pediatric coordinator at UC Davis Health’s Hemostasis and Thrombosis Center (HTC) in Sacramento, California.
If a caregiver is properly informed and supported, “parents should be able to enjoy a night out, go on vacation, or take time for themselves without constantly worrying about whether their child is safe,” she says.
Here are four tips from Mamangun to help prepare a babysitter, grandparent, or other trusted person to take care of your child:
1. Provide Detailed Information
Before you leave, explain your child’s diagnosis, the severity of their bleeding disorder, their treatment regimen and whether they’re prone to particular types of bleeds.
“The sitter should know how to recognize a possible bleed, what to do if they are concerned or unsure, and whom to call,” Mamangun says. “I would recommend providing written instructions so that the sitter has something to reference.”
Young children may not be able to say what hurts, so explain the signs of a possible bleeding episode to watch for: a sudden limp, refusing to walk, not using an arm, unusual fussiness, or protecting a particular part of the body. Swelling, warmth or tenderness may also be signs of a bleed.
Parents should also review basic first aid. “For minor cuts or scrapes, this may include direct pressure, cleaning the wound, and using a bandage. For bumps or injuries to the arms or legs, caregivers should know when to stop the activity, apply an ice pack wrapped in a towel, and contact the HTC if there’s concern for a bleed,” Mamangun says.
Make the call plan clear. “For routine questions, the sitter can contact the parents,” she says. For a suspected bleed, a potentially concerning injury or anything they’re unsure about, the caregiver should contact their HTC.
“We would much rather have someone call with a question than hesitate because they’re worried they’re overreacting,” Mamangun says.
A concerning head injury always requires prompt attention. Never wait for symptoms to appear before seeking advice. For a life-threatening injury, severe uncontrolled bleeding, difficulty breathing, loss of consciousness, a seizure or other serious neurological symptoms, call 911 immediately.
“For a serious injury or emergency symptoms, sitters should always seek emergency care immediately rather than delay treatment while trying to reach the parents or the HTC,” Mamangun says.
2. Have Emergency Supplies Ready
Keep an emergency bag somewhere that’s easy to access, and show the caregiver exactly where it is. “The bag should include the child’s medications, other supplies, and an emergency treatment letter from their HTC,” Mamangun says.
The letter should explain your child’s diagnosis and treatment plan, what to do in an emergency, and how to contact the HTC. It can be especially helpful if your child needs to go to an emergency department that may not be familiar with their bleeding disorder. Mamangun also recommends including a copy of the insurance card, medication information, and emergency contacts.
Consider also packing basic first-aid supplies, such as gauze, bandages, an ice pack, and an Ace wrap. If medication requires refrigeration, keep it in an accessible cooler bag that can be transported. Check the bag from time to time so you can replace anything that has been used or needs updating.
3. Set Activity Expectations
In preparation for having a sitter, discuss any activity restrictions with your child’s treatment team so you can explain to your caregiver what’s appropriate, what needs closer supervision, and what activities to avoid.
“For younger children, activities such as playground slides and age-appropriate play structures can generally be enjoyed with proper supervision. I would encourage caregivers to pay attention to the height of play structures and the type of surface underneath the equipment,” Mamangun says. “Climbing on taller structures or participating in activities where there’s a greater risk of falling should be supervised more closely or avoided, depending on the child’s individual risk.”
When riding a bike or scooter, Mamangun’s HTC recommends both helmets and knee pads. “I always encourage families to let their children be children,” she says, “but every child is different, and we assess each child’s individual risk based on their diagnosis, severity, bleeding history, and treatment regimen.”
4. Know that Your HTC Is There to Help
You and your child’s caregiver don’t have to figure everything out on your own. Your HTC can help you prepare, answer questions, and guide you if a concern comes up. “For example, you can ask your HTC to provide a simple flyer or cheat sheet with signs and symptoms of a bleed and what to do if one is suspected,” Mamangun says.
She also recommends arranging for a sitter or family member to meet with the HTC before caring for your child, especially if they have multiple questions or concerns. “This meeting can be in person, over the phone, or through a video visit,” she says. It gives the caregiver a chance to learn more about your child’s diagnosis and treatment plan and become familiar with the team.
If someone will care for your child for an extended period, let the HTC know ahead of time. The team may be able to coordinate an infusion appointment, arrange a home health nurse or schedule an appointment with an HTC nurse to administer the medication.
In general, Mamangun says, having open communication, sharing updates about the child’s health or treatment plan, and encouraging the sitter to ask questions can also help build a trusting, long-term relationship.
“Ultimately, we want parents to feel confident leaving their child with someone they trust, and we want sitters to feel supported,” she says. “They don’t have to know everything about bleeding disorders — they just need to know what to look for, when to ask for help, and that their HTC is there to support them.”
Learn more about choosing a babysitter and helping caregivers be prepared.