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Communicating the diagnosis

When breaking the news to the family, you could start by saying: “Congratulations on the birth of your little girl/boy (use baby’s name). I have some information about (use baby’s name) that I need to share with you. It looks as though she/he may have Down syndrome. We’ll do some tests and let you know the results as soon as possible. Your baby is doing just great and would benefit if you could start nursing her/him as soon as possible. I would encourage you to have the baby “room in” with you during your stay in the hospital. This would be the best thing for both you and the baby. There are great resources available on Down syndrome. Talking to other parents and getting information also helps. Would you like me to make contact with the local Down Syndrome Association for you? They can drop off or send some information and perhaps have a chat with you. The up-to-date information you receive from them can be very helpful”.

The difference between compassion and pity is that compassion is based on connection and pity on separateness. I imagine both the compassionate and pitying think: “Thank God that’s not me” the difference is that the compassionate person remembers that it just as easily could have been

BREAKING THE NEWS

As medical professionals the chances are very good that you will be the first person to utter the words ” Your baby has Down syndrome” This is not an easy task as those words will change the life of those parents forever. At first their hearts will be broken, they will probably feel as if their lives have shattered into a million little pieces and that nothing will ever be right again. Miraculously though they realize that their hearts are not broken just bruised, that their lives can be glued back together piece by piece and that even though their child has Down syndrome it is the end of the world as they knew it and the beginning of the world as it is now not worse just different.

What is remarkable is that the way the news was conveyed often leaves a bigger scar than the diagnosis itself, you want to make sure you get it right the first time, as your words will have lifelong impact. When those words are spoken – pre or post natal – that parents world falls apart and nothing can prepare a parent for this.

Some tips on how to tell parents about their child’s diagnosis of Down syndrome

  • If you are not comfortable and confident – act like you are….
  • Tell sooner rather than later – when you suspect it – but after the mother has settled from the birth.
  • Both parents should be present for the initial diagnosis. In the case of a single mother, her significant other, birth coach or family member should be with her for support.
  • Do it in a private setting
  • If the baby can be present it is better. The baby should be held by the parents or by the physician when the diagnosis is discussed.
  • Use sensitive language. Don’t say “I’m sorry” or “I have bad news” and speak only of what you know – don’t make predictions good or bad. It is better to say “I don’t know” than to speak nonsense. What is for you a moment in time, is for them the beginning of a life long journey.
  • Don’t say “God knows who to give these children to – you must be a very special parent.”
  • Don’t share your personal opinion regarding Down syndrome unless the parents ask for it.
  • You do not know the abilities of any baby – don’t put limitations in the minds of the parent.
  • Celebrate to birth of the baby with the family. Congratulate the parents!
  • Use people-first language e.g. “Your baby has Down Syndrome” NOT “She is a Downs baby”.
  • Use the baby’s given name.
  • The correct term is Down syndrome or Trisomy 21, do not use other names or terms.
  • Remember everybody in this scenario is an individual no two people with Ds is the same or have the same ability. DS is not a “one size fits all” – parents are individuals and so are their children
  • It is important to tell them that they did not cause this – guilt
  • Encourage nurturing and if there are no immediate medical concerns, the baby needs to go home as soon as possible. The baby’s needs for the most part are the same as those of any other infant.
  • Encourage breastfeeding, suggest the staff assist or contact a lactation consultant or speech therapist.
  • Children with Down syndrome are typically healthy children.
  • If there are any other medical problems related to their child specifically tell them – but not possible things like leukemia or possible diseases – you will not tell other parents the probability of their new born contracting possible illnesses.
  • Accentuate the positives, e.g. “She may learn at a different pace” INSTEAD OF “She may never read”
  • There are many different ways to understand, accept and cope with information that was not expected. Don’t make judgments.
  • The parents go through the stages of grieve – shock, disbelief, anger, bargaining, acceptance
  • Knowing before birth has no real bearing on acceptance
  • Plan follow up visits to discuss other common medical concerns as parents are often overwhelmed upon the initial diagnosis.
  • Give them factual up to date printed material.
  • Give them the contact information of a local support group.
  • Ask the family if you may contact the local Down Syndrome Association in order to have a resource/support parent visit the new family as soon as possible.
  • Delivering such sensitive diagnoses remains challenging, but time for change is now. Let it begin with you!

 

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