Don’t worry about what painting the baby’s room blue or pink.
When Jasmine Warren underwent her 18-week ultrasound, she discovered she would give birth to a son with Spina Bifida, a condition she’d never heard of.
Warren had no idea what Spina Bifida was, nor did she know what to expect.
She then had to figure out how to explain the condition to her three young daughters. Describing a disease like Spina Bifida to younger children who continually ask “why,” while trying to get the answers for yourself, can add plenty of stress to the pregnancy.
The Child Life Department at Le Bonheur Children’s Hospital, comprehends the family dynamic with these diagnoses.
“It’s not just about a single individual; it involves the entire family. Siblings, grandparents and spouses. We attempt to include the whole family,” says Lauren McCann, Child Life Manager.
Le Bonheur gives mothers-to-be and their families “life coaches” via its Fetal Center to generate blueprints on what to look for regarding the upcoming baby’s diagnosis and ways to answer the questions, even to younger children.
“Discuss it in a manner that children can understand. There’s no need to use all the medical terminology available,” says McCann. “We make certain we use relevant terms. ‘The small opening in your child’s back’ is the best way to describe what Spina Bifida is to a layman.”
For the more in-depth talks, Child Life initially becomes acquainted with the family and the ways they handle discussions about serious subjects.
“Parents know their kids better than anyone else. I know plenty about children’s developments but I know nothing about that particular child,” says McCann.
Warren stated her eldest daughter will be more understanding while asking fewer questions; her middle daughter, however, will ask lots of elaborate questions.
With the assistance of McCann, Warren laid out a plan for her family. She’ll explain the basics of Spina Bifida to the younger girls, not going into details until the little boy is born. In this, they’ll have more insight on the ways Spina Bifida will influence their family specifically.
“Warren wants the ability to get her children ready for a baby brother, not Spina Bifida in general but in his particular case,” says McCann, “You should be specific, and you’ll need to know exactly what’s happening. Waiting until seeing how the baby is will be good for them because there’ll be definitive answers to their questions.”
Warren says the “life coaches” assist her by teaching her about what her boy will be brought into the world with and how to explain it to the girls. The coaches completely removed the worry from her mind.
“When your baby is characterized as having a condition you’ve never heard of, it becomes so much more difficult,” says Warren, “You want the ability to know that if you need answers about anything, life coaches can help you through it all. That makes things lots easier when you know you have somebody to contact.”
- Time for ‘hidden disabilities’ to find their global voice @SpinaBifidaScot @ifsbh (jackiebland.wordpress.com)
- New treatment may work with folic acid to boost prevention of neural tube defects like spina bifida (medicalnewstoday.com)