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 But what if the news you receive is not the one you were hoping for? What if these early screenings indicate that your child will be born with a birth defect or, worse, have a fatal condition? Where do you turn? What do you need to know about how to prepare for any of these circumstances? How do you educate yourself and prepare emotionally and financially? We spoke to Vicki Lombardo, associate state director of Program Services for the March of Dimes, and she informed us about the vast resources available to parents in this very difficult situation. “First of all, parents need to realize they are grieving and need to let themselves go through the grieving process,” Lombardo says. “They are mourning the loss of their dream of a perfect child and need to understand that.” Lombardo says that once the shock wears off and you are nearing the acceptance phase, the best thing to do is educate yourself. Talk to people. Talk to the hospital staff. Research the exact condition your child is likely to face. “On marchofdimes.com, you can search a variety of topics on prematurity, birth defects and infant health,” she says. “Search for a specific diagnosis, and it will be explained in clear layman’s terms.” If the condition you are looking for isn’t included, or if you need more information, email askus@marchofdimes.com and explain what questions you need answers to. A master’s-degree-level educator will prepare a response with whatever information you need and at your specific level. “For instance, if you are a Ph.D. and want technical terms and an in-depth breakdown, we can do that,” says Lombardo. “If you want it in the simplest language possible, we can do that, too.” While you are trying to understand and process this, it is very helpful to talk to others who have gone through it. At the bottom of the March of Dimes website is a “Share Your Story” link, which will connect you to a community where you can reach out to other parents who have gone through similar circumstances. They can share with you their best tips on how to learn what you need to know. “There will be questions you don’t even realize that will come up,” says Lombardo. “Reading the words of other parents who have been through it all can be very helpful, especially when you are feeling lost and overwhelmed. They are there to help you.” The website is very user-friendly, and you can participate as much or as little as you like. It can put your mind at ease when you discover that other parents are there to give tips on how to deal with insurance companies and provide information about breakthrough therapies. Many of these parents have gone through the process the hard way and are there to help ensure that you won’t have to. If the condition your family is facing indicates that your baby will not survive, you need to be prepared for that, too. “You will need to have a birth plan, regardless of your baby’s condition,” says Lombardo. “Most larger hospitals have a program in place and can help you. “This is your experience, and you should be specific about what you want: who you would like there, how you want to spend the time you have with your baby, etc. It is your time, and you should be able to cherish every moment you have as parents to your child.” You can also go to sites such as the American Pregnancy Association (americanpregnancy.org) to find templates for, and samples of, birth plans. This can help you address every issue you need to consider. “I would encourage talking to the nursing manager for labor and delivery, or checking with Women and Children’s Services and participate in every single one of the programs they have to offer,” says Lombardo. “The more you know, the more you can be prepared and the better you will be able to process everything you are going through.” FOR MORE INFORMATION: After the diagnosis, educating yourself and speaking to other parents can be invaluable when trying to process the challenge your family will soon face. Where can you go for answers? • Ask your OB/GYN or hospital about what plans they have in place. • Visit marchofdimes.com to find out more about the condition your child will have, and educate yourself. • Reach out to other parents through hospital programs or online forums. Know that you are not alone. • Create a birthing plan; make arrangements based on your doctor’s recommendations. • 211 Orange County (211oc.org) is a comprehensive information and referral program for Health and Human Services information throughout the county. Visit our Baby/Maternity directory for some great resources. |
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