Parents either learn the diagnosis Prenatally or Postnatally. Those that learn prenatally are more often than not given the option to terminate. If they or the MD has never met a child with Down Syndrome, the prognosis is extremely grim, its no surprise that ninety percent of parents who learn they are having a child with Down syndrome choose to terminate.
Postnatally, blood tests are coming back with false negatives or the U/S is negative for any soft markers. The parents are completely unprepared, overwhelmed, and scared. The family is grieving, its almost like the child has died, for the child they dreamed of is not the child they are taking home.
For either of these families it takes a few months to get over the shock. The diagnosis is extremely difficult for parents and their extended families, and should be handled very delicately, physician’s please watch the film, it will give you insights to help you give that diagnosis. Thanks for taking the time with our families.
One way to help is to give the parents our F.R.I.E.N.D.S Parent Packets. If they would like to talk to us, we do Peer Liaison visits or calls. Please reach out to us and we will deliver the packets to your hospital, doctor's office, or clinic. We also offer Lunch & Learns for new interns, nurses, and students. To give you a parents perspective on the challenges of raising a child with special needs. Call us anytime (813)245-2782.
Ann Foyt, R.N. Case Manager
F.R.I.E.N.D.S Executive Director
HOW TO GIVE THE DIAGNOSIS OF DOWN SYNDROME TO PARENTS
The American Journal of Medical Genetics, reviewed the evidence in how to deliver a prenatal diagnosis of Down syndrome and made nine recommendations for physicians based on the results, among which showed that expectant couples:
- Prefer to receive a diagnosis from physician.
- Prefer to receive the diagnosis as soon as possible following definitive prenatal testing and in the company of their partner.
- Wish to receive the results of their definitive testing in person or at a pre-established time by phone.
- Want to be provided with accurate information about Down syndrome and medical conditions associated with the disorder.
- Value being given the opportunity to reach out to parents of children with Down syndrome.
In Pediatrics, the evidence of how to deliver a postnatal diagnosis and recommendations for how parents should receive a postnatal diagnosis, including:
- Obstetricians and pediatricians should be the persons to deliver the news, jointly, to new parents.
- The diagnosis should take place in a private setting as soon as a physician suspects a diagnosis of Down syndrome.
- Both parents should be informed together, if possible.
- Conversations should start with positive words, avoid language that conveys pity or sorrow, and not involve unsolicited personal opinions.
- Accurate, up-to-date information should be communicated, and information offered for local support groups and community resources
If physicians can implement a few simple measures such as these, hopefully all mothers will be able to say what one parent once wrote me, “Although the news was certainly difficult to hear at first, my doctor gave me the news in such a kind and sensitive manner.”