At the time of Diagnosis:
Mother’s have used the words and phrases such as, “blindsided, devastated and rug pulled out from underneath me.” Some say it feels that time has stopped. Many mothers report that after hearing the initial diagnoses they can no longer absorb the words of their health care provider. Many have reported that the line before and after is indelibly drawn in their memory. Learning that your baby has Down syndrome is not an easy thing for anyone to face, and the mother and father may be experiencing a roller coaster of emotions. While everyone handles the diagnoses in their own way, certain reactions are common in new parents of a child with a disability. For the majority of parents, the period immediately following the diagnoses is filled with uncertainty and doubt. For parents who did not know they were having a child with Down syndrome to parents who knew they were at a higher risk of hanging a child with DS, acceptance can be difficult or, at first, seem impossible.
We encourage all medical professionals to become familiar with thebelow recommendations prior to speaking to a new family:
- When the diagnoses is presented, try to arrange for the mother and father to be together in a private setting, with the baby. Whenever possible, the physician should make the announcement with both parents present. It is helpful for the nurse, or social worker to be present, as the initial shock may prevent the parents from absorbing what the doctor says.
- When delivering the news about DS the physician should first congratulate the parents on the birth of their child. If the parents opted for prenatal testing for Down syndrome, it is important for medical staff to not pass judgment on the family for it is their decision to pursue testing. The medical staff should never say or insinuate, “Well, you did have a test and you should have known, so I am not going to provide support.” Expectant parents may have had prenatal testing done to arrange different birth plans for a child with Down syndrome or to provide reassurance. Some people also may want to pursue termination or adoption. Those who proceed with prenatal testing often prepare for the results by learning and educating themselves about Down syndrome.
- Parents may ask you how you know the child has DS. We recommend that physicians and nurses include the positive aspects of DS in their first descriptions of the condition. Many mothers mentioned that the best word used by their physician during this initial explanation were, “love your child like any other child.”
- Encourage the parents to ask questions of the appropriate medical professionals. Make sure that they have a pen/paper to write down any questions that they may have. Make sure both parents have an opportunity to have their questions answered.
- Mothers should be provided with up to date printed materials. Most new parents were frustrated at either receiving outdated information or no information at all. At the end of this letter, NADS provides a list of current and up to date names of organizations; resources; websites and medical information for the new families to become familiar with, once they are ready.
- Assure the parents that they did nothing wrong and they did not cause their baby to have Down syndrome.
- Health care professionals should keep their personal opinions to themselves. Mothers have asked physicians to offer sound medical advice based on up to date information, but not personal opinion.
- Parents may ask you about the developmental milestones regarding their child. For example, “When will my child crawl or walk? When will my child talk?” Although you are a qualified medical professional, you do have a crystal ball neither the parents, nor nurses or doctors do not have the ability to see into the future. At this early stage of the game, you have no idea what the cognitive ability/disability or when the developmental milestones will/will not happen. Remember, no crystal ball.
- If the new parents are interested in having a Parent Support Volunteer contact them, please get the approval of the parents first. They may either make the phone call themselves, or have youcontact NADS on their behalf.
The National Association for Down Syndrome (NADS) provides support services to families in the Chicago metropolitan area. NADS’ Parent Support Program is very helpful to physicians in guiding parents through the first several months when they become aware that their child has Down syndrome. Parents who have experienced the same problems can help new parents deal with them from a position of real knowledge, having been there themselves. All parent support volunteers are mothers and fathers who also have had a child with Down syndrome.
Parents will never forget their birth experience, and even though it is a challenging and difficult time, they will always remember your kindness, concern and support- Thank you Nursing Staff- for all that you do for our families.