This is what all parents, whether new to the role or well-seasoned in raising children, look forward to with the birth of a baby. It’s this expectation that makes birth defects doubly tragic. Along with impairing a baby’s health, life expectancy and ability to thrive and achieve his or her potential, the occurrence of a birth defect sends hopeful new parents crashing to the ground.
Parents of babies born with birth defects can feel guilty, ashamed and anxious. Sometimes they struggle with feelings of responsibility, believing they ought to have been able to prevent it or somehow mitigate its result. Sometimes they have trouble bonding with their new child, and experience corresponding feelings of guilt. Nearly all of them feel deeply troubled for their child’s future, wondering where they can find help to guide them on this journey of raising a child with unexpected or unusual needs, or if there is any hope at all.
Birth Defect Research For Children
Birth Defect Research for Children, a nonprofit group based in Orlando, helps parents all over the country make informed decisions about their child born with a birth defect.
Launched in 1982 by the parents of a boy born with birth defects allegedly linked to the morning-sickness drug Bendectin, the organization grew out of their 7-year quest to find answers to the doctors’ ignorance of how their son’s health problems came about.
Along the way, they discovered how little information was available to parents who wanted to understand the sources of birth defects.
Since its homegrown beginning, Birth Defect Research for Children does a lot more than help parents investigate causes of their children’s birth defects. The organization tracks and evaluates commonly occurring birth defects, publishes breaking research, reports and cases related to birth defects and offers support services to parents of children with birth defects. Their website also provides a guide to expecting parents with advice on promoting a baby’s health before birth, in areas from genetics to personal care to your home, garden or office environment.
The Birth Defect Research for Children focuses its work around the emotionally charged question that every parent in this situation asks, sooner or later: “Why my child?”
National Birth Defect Registry
In addition to the resources they offer, the organization also runs a data collection project they call the National Birth Defect Registry. Designed with a team of prominent scientists, the registry gathers information about every kind of birth defect imaginable, with questions about both parents’ health and history, genetics, environmental exposures and even questions about the influences on a child’s health stemming from exposures during the Vietnam and Gulf wars. About 6,000 questionnaires have been collected by the Birth Defect Registry since 1990, and their research has been used to provide insight on several national birth defect issues, including gastroschisis, the autism spectrum and region-specific epidemics from Alaska to Tennessee. The goal is to uncover connections that can point to a cause driving a certain defect.
Their motto — “Because Every Birth Defect Has a Cause” — demonstrates the organization’s heartfelt commitment to helping parents navigate life and love in relation to a child born with a birth defect. We commend their work and look forward to their findings helping this community of strong, compassionate parents.
Get Someone on Your Side
The team at the Perey Law Group has seen more than our share of birth defect cases. To help understand how they happen, and also help prevent them, read through our chart listing the research on common causes of birth defects.
If you need help in a case of birth defect due to malpractice and negligence, contact us today at 206-443-7600 for a free, no-obligation consultation to learn what your rights and resources are. We may be able to fight on your behalf.