Never mind worrying about what color to paint the nursery. After Jasmine Warren's 18-week ultrasound, she found out her unborn son would be born with a condition she knew nothing about: Spina Bifida. "I'm, like, what do I expect? What comes with Spina Bifida?," recalls Warren. Then came the question of clarifying it to her three young daughters. Explaining something like Spina Bifida to a young child who constantly asks "why," as mom is trying to find the same answers, can add to pregnancy stress. At Le Bonheur Children's Hospital, their Child Life Department understands the family dynamic behind these diagnoses. "It's never just about the one person; everybody is involved in this. Spouses, grandparents, siblings: We try and take care of the entire family," says Child Life Manager Lauren McCann. Le Bonheur provides expecting mothers and their families with "life coaches" through its Fetal Center to come up with a game plan on what to expect with the new baby's diagnosis and how to explain it all even to the young siblings. "Address it in a way that's appropriate for a child to understand. We don't need every single medical term that's used," says McCann. "We make sure we're using appropriate terms. ‘Small opening in the baby's back' is a great way to explain what Spina Bifida is." For the deeper discussions, Child Life first gets to know the family and how they handle family conversations about serious subjects. "They know their children better than anybody else. I may know a lot about child development but I don't know about that specific child," says McCann, "So the child based on their age or their developmental level or just who they are as a child may be able to handle information better than others may." Warren says her oldest daughter will understand more and ask less questions; her middle daughter, she says, will ask a lot of detailed questions. Her family plan is to explain the core of what Spina Bifida is to her younger daughters; she will hold off on details until baby brother is born and they know how the condition will specifically affect their family. "She wants to be able to prepare her children for baby brother, not Spina Bifida generally but in his specific case," says McCann, "You want to be specific, you want to know what exactly is going on so waiting until we see how he is beneficial for them because we have clear cut answers to questions." Warren says having "life coaches" to help her through learning what her son will be born with and how she can explain it to the new big sisters saved her a bassinet full of worry. "When your child is diagnosed with something you've never heard of before, it makes it that much harder," says Warren, "You want to be able to know if I need to ask the doctors or the life coaches anything or how to deal with thing. It makes it that much easier to know that you have someone to call."
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