When your child is diagnosed with a birth defect, there is an immediate list-making response. Duties, tasks and intentions pile up in your mind of doctors to consult, appointments to make, tests to run, answers to find.
One task that may not immediately occur to you, however, is one of the most important: the task of seeking out community.
Ascertaining your child’s special needs should be foremost in your mind. But after years of working with parents of children born with a birth defect, the team at Oshman & Mirisola has heard again and again that the need for friendship and support is just as important for families as the need for a good doctor, therapist or attorney.
No one anticipates a birth defect. Even when it’s detected early in a pregnancy, it’s difficult (if not impossible) to predict exactly how your child’s condition will play out in his or her life and how it will affect your family. Parents deal with thwarted expectations of what parenthood would be like; families have to confront challenges they didn’t imagine; growing children repeatedly recognize the differences between themselves and their peers.
Dealing with these realities, and the emotions that result from them, should not be done in isolation. And fortunately, it doesn’t have to be done that way. The Internet age has brought community support systems within easy access to anyone, anywhere.
Resources For You
The following sites offer advice, information, news, shoulders to cry on and platforms to share inspiring stories to families of children born with a birth defect:
This comprehensive site is divided into specific categories of wellness and health issues. The “Genetics and Birth Defects” page offers lively discussion threads on genetic conditions, birth defects, genetic testing and news items related to all of the above. There are also resources and discussions on how to deal with the news that your child has a genetic condition or birth defect, and resources for people who are themselves living with a condition brought on by birth defects. Inspire’s general mission to connect patients, families, friends and caregivers for support and inspiration translates into a valuable source of community, where parents and children affected by birth defects can trade their experiences and the wisdom they’ve gained from them.
Most people know Parents as a familiar print magazine. But by joining the website (for free), users can find introductory information on nine of the most common birth defects in newborns. While most of the information is presented in anecdotal form, as opposed to strict research-based findings, it’s a helpful place to learn the commonness of various birth defects’ occurrence, along with a briefing on the causes, symptoms and treatments of each defect. The frequently updated site also offers the latest news about occurrences of birth defects, along with tips and cautions related to pregnancy risks.
In 2009, a group of parents, doctors and service providers came together to start this organization. Designed to offer important information to parents and caregivers of children born with birth defects, this beautifully presented website is like stepping into the living room of a sympathetic friend. The goal of My Child Without Limits is to equip parents with a three-fold plan for raising their child born with birth defect — Understand, Plan and Act. Along with a helpful Resource Locator tool for finding localized supports and services, the site hosts a community section where professionals and parents, friends and caregivers can come together to seek answers and find strength.
Call Us Today
The law firm of Oshman & Mirisola has vast experience in handling medical malpractice cases in the states of New York and New Jersey.
If you suspect that your baby’s defect was the result of a drug you took of of the negligence of a doctor, contact us today at (800) 400-8182 for a no-cost consultation, or fill out the contact form on the right side of this page.