Help For Parents of Children with Birth Defects

Parents need help. This is a tried and true statement and it does not matter if you have one toddler in the terrible twos or a set of triplets who are all deciding to quit napping on the same day. Even as these scenarios make everyone chuckle and are indeed not unusual for parents to experience and acknowledge that some help would be most welcomed, help for parents of children with birth defects is usually treated with a different attitude. Many times it is the parent who will refuse to seek help, not for fear that no adequate assistance may be found, but instead due to unfounded feelings of guilt and sometimes even shame.

Parents may be ashamed of their child, especially if the birth defect is clearly visible and contributes to a gross disfigurement of the child’s features or body. They may not wish anyone else to come in contact with their child and may refuse even the help of close friends or extended family. Part and parcel of this shame may be guilt. Yet even without the shame attached, guilt is a driving factor for parents to refuse help. If a birth defect is directly attributed to a parental behavior prior to the child’s conception or birth, then the resulting condition is seen as a well deserved punishment and the parent may feel that bearing the full brunt of the hardships that come from taking care of their child is theirs to take. Similarly, if the parent feels guilty about their relationship with the child’s other parent or their relationship with their own parents, the mother or father may see the child’s birth defect as a divine punishment and thus will not accept help.

This is not only unwise and dangerous, but also entirely unnecessary! No matter what deity you pray to or what behavior you engaged in, the fact that you are now parenting a child with a birth defect demands that you make use of all the resources available to you in order to ensure that the child’s physical, emotional, and cognitive needs are met. If you are overtired, run down, and ragged with guilt, the odds are not good that you will have the ability to supply the care the child needs and deserves.

Help is available from a variety of sources: there are support groups, some of which are founded by parents of children with a similar birth defect as yours. Other assistance may come from home health agencies that can provide an in home care provider to give you some time to yourself while taking over the more demanding medical aspects of the care associated with your child’s birth defect. Faith communities are wellsprings of help of well meaning people who will be happy to just sit and listen to you talk – something you might not even realize you have not done since bringing home your child from the hospital. Extended family is a most valuable source of strengthening and help. Allow your siblings to come and coo over the baby or wash the windows; don’t fear handing your mother-in-law the scrub brush and toilet bowl cleaner while you take a nap; permit your grandparents to sing to the baby and feed her or him while you take a bath. Help for parents of children with birth defects is not just a nice idea; it is a necessity for the wellbeing of the child and parent!