Because Birth Defects Don’t Stop at Birth
Recently, a mom contacted Birth Defect Research for Children. Both of her sons had been born with cystic hygroma, a condition that is usually diagnosed soon after birth. Her sons were older now and starting to have some other problems. This mom wanted to know if any of them could be associated with their original diagnosis.
In just a few minutes, we were able to check our National Birth Defect Registry database which has comprehensive information on over 6300 cases of children with birth defects and developmental disabilities.
We were able to tell this mom that we had 28 cases of cystic hygroma and we also were able to give her a listed of the associated disabilities reported in these cases. Many of these conditions were those this mother was concerned about.
She immediately entered hers sons’ cases in the registry so that she could be connected to other families who had children with the same conditions. The Registry’s National Parent Matching program can connect families all over the country by both a main diagnosis and associated conditions.
Parents have praised our Parents’ Matching Project.
I met my best friend through your parent matching project. No one understands what it is like to have a child with a serious heart defect like another mother whose child has the same thing.” LC
“I wondered if other veterans’ children were having repeated ear infections. Through your parent matching program, I found that the answer was ‘yes'”. BW