Nine years ago, when Janet Patterson prepared to return to work after having her second baby boy, she worried. She had to educate new caregivers about his severe hemophilia A. And because she worked about 30 miles from her home in Murfreesboro, Tennessee, a commute of up to an hour each way, she feared she wouldn’t get to him quickly in an emergency.
“I think there’s a higher level of stress for a mom who has a child with health issues,” Patterson, 46, says today. Those early months were quite the adjustment, she recalls.
“When parents go back to work, they are concerned and want to make sure their child doesn’t get hurt,” says Diane Standish, LSW, a mental health professional at the Hemophilia Center of Western Pennsylvania in Pittsburgh. Many parents feel guilty about going back to work or school, or increasing their work hours. They wonder, ‘Is my child going to be OK physically and emotionally?’ ” she says.
The biggest issue may be determining who will care for your child. You may choose a licensed daycare program or a helpful family member. Either way, make sure caregivers are informed about your child’s bleeding disorder, its complications and any activities your child should avoid.
Standish advises parents to be upfront and talk openly to the caregiver. (See sidebar, “Making It Work” in the free tablet app.) “You want to call attention to the disorder, but you don’t want to scare the caregiver,” she says. “Parents can ask caregivers to monitor their child closely, but must understand that the child cannot be kept in a bubble. Finding the appropriate balance takes time; it’s a learning process.”
Patterson and her husband began giving their son prophylaxis when he was 13 months old. Suddenly, her mornings became hectic. So she worked out an arrangement at her job so she could come in an hour later on prophy days.
“The first thing I did was share the situation with my boss,” says Patterson. She explained that she’d especially need flexibility in an emergency if she had to pick up her younger son. “Having your employer be aware that this condition exists is important.”
The work adjustments Patterson made helped her family. At one point, Patterson chose a daycare close to her job so she could be near her youngest son during the day.
Now a stay-at-home mom, Patterson remembers working outside the home as being demanding for her family. Adjusting to her son’s port, which was in for eight years, and learning the process of prophylaxis were challenging.
“New things are always hard,” Patterson says, reflecting on her working experience. “But you do what you have to do. With time, it all becomes easier.”