What to Say When a Baby is Born with Down's Syndrome

 

So, you hear the news that someone in your family, a close friend or an acquaintance has given birth to their baby. Great news!  


But within seconds you are told that the baby has Down's Syndrome.  


"Oh.... "


[There follows a mixture of disbelief, shock, stunned silence, anger, hurt, disappointment, perhaps a feeling that a sixth sense told you so, a desire to 'fix things' or even, perhaps if you are young you just don't understand, but if you already love someone with Down's Syndrome, a sense that this is not the end of the world, that you will gently guide them.]


So what do you say and do?
Well, I can honestly say that I have never been in this position in my life... But I can say with equal measures of honesty that we probably experienced the full gamut of reactions from those within our social circle in the weeks following Natty's arrival.  So I can tell you what worked for us...

Everyone is different of course, and this is never truer than in matters of pregnancy and birth, but whatever thoughts and emotions you have as onlookers, the parents will have already experienced them 100 fold.  Oh yes.

1)  Don't be afraid to say something.  
This is where Natty's entrance into the world really sorted the wheat from the chaff amongst friends.  Longstanding friends didn't know what to say and soon disappeared, awkward and embarrassed.  Those we'd got to meet relatively recently stepped up to the mark, supported, helped, offered childcare during our never-ending trips to the hospital.  Family drove through the night to meet her, also in shock, but there.

The Wise and Respected Godmother says that when people are in crisis you must never be afraid to talk to them.  If your words are meant with kindness, even if you don't quite say the right thing, you can't make them feel any worse than they do already.  The only way is up.  It's a win win situation, if you see what she means.

2)  Congratulate the family on the arrival of a beautiful new person in the world!
My husband popped the cork on the bottle of vintage champagne we had bought for the happy event anyway.  We toasted our daughter who lay in an incubator in intensive care that night, even though that was the last thing we really felt like doing.

Send a card of congratulations (not condolences!), send a small gift for the baby to have near her if she is in hospital, buy a small pack of toiletries or wholesome snacks for parents spending many hours in hospital or purchase a pretty coolbox for mums transporting breast milk to and from hospital twice a day.

Ask to see the baby or a photograph, ask if s/he has a name yet, how much she weighs, how the birth went, in fact anything you would normally ask any new parent.

Our dear neighbours (who happen to be incredible, supportive doctors) immediately bought us a beautiful rose to plant in the garden, called 'Congratulations'.  When we did work to the house it had to be moved...I was SO nervous as I attach so much sentimental value to it.  It survived!

3)  Be realistic
When people acknowledged the challenges ahead of us and our feelings of desperation, it made us take their words so much more seriously.  Over-optimism can be very insincere after all.  Understand that the parents are grieving the loss of the healthy baby they were expecting.

The midwife who said "None of us want this for our children, but she is beautiful and you will cope."

Another who countered my "I don't want to love her because I am afraid she's going to die," with "That baby needs your love my dear, whether she lives or dies.  So get to that hospital and give it to her."  So very wise and true.

"It will be hard but I will help when I can."  "She is looking a little stronger/better than when I saw her last."  "I can't imagine how you feel...."  all delivered with hugs from friends.

But be prepared for any advice you give to be ignored.  If I had a pound for every time someone gave me the number of the lady who runs the local Down's Syndrome Support Group I would be rather wealthy.  It took me 2 years to contact her (she is a dear friend now), but we still remain rather a private family (believe it or not!) and do not join in many organised group activities.

And I didn't once ever contact any friends of friends whose phone numbers were passed my way simply because their children had the same number of chromosomes as mine....you get my drift.

4)  Avoid outdated language and clichés
Just say the baby HAS Down(s) Syndrome.   (I can't bring myself to say the other phrases but you all know what I mean)

S/he is a baby first and foremost.  S/he will have the features and traits of her family before those of any other child with Down's Syndrome.  She will follow their path, learn their traditions and values, and be dressed the way they want her to.

S/he is here.  Don't ask endless questions about ante-natal testing.  (You might also want to avoid mentioning the mother's age or the state of her eggs!  One of the loveliest DS Mums I know was 18 when her little girl was born...)  I actually don't mind people asking "Did you have testing?"  It's the "Didn't you have testing then?" that gets me...the subtext being that if we had, she wouldn't be here of course.

And for my part...if just one more person had told me Natty would be loving and musical because 'they' are loving and musical aren't they,  I could have stood in the middle of Farmer John's field next door and screamed for a week!

For unbiased advice that covers all bases, you can't do better than read the free leaflet published by the Down's Syndrome Association, available free in PDF format:
Downs Syndrome Association Leaflet for Friends and Family

PS)   This is not number 5) because it is not advice
Perhaps it's just the way I am, but  reverse psychology worked pretty well on me.  I can clearly remember 2 pieces of shockingly negative input from 2 separate individuals.  So shocking and so negative that they made me sit up and think, ''Right, you'll see!"...

The first was from the kind of nonchalent midwife that wafts through your space shortly after the news has been given to you about your baby's diagnosis.  When asked by my doula what we should do about the breast milk (meaning - how to get it into the baby) she replied "Oh, don't worry about that, it'll soon dry up after the shock she's had today."
RIGHT then...breastfeed I WILL, the same way I fed her sister.
It took 3 months before the naso-gastric tubes came out, but we mastered it (another blog perhaps?).

The second was from a professional acquaintance who (perhaps speaking from personal experience) spouted, "You don't have to keep her you know.  You can just say goodbye, nice knowing you..."
I might have been waivering on whether we could cope or not, but this made me realise that no adoptive/foster parent could do it better than us!

And do the very best we have done since that moment.


In summary, the birth of any of your children should not be by far and away the very worst day of your life.  
For so many of us it is.  
And simply the right words, actions and attitudes could change that.  


Tell it right.  From the start.

Advice For Medical Staff Giving the Postnatal Diagnosis:
The way in which the diagnosis of Down's syndrome is communicated is often done in a dissatisfactory manner.

The firm diagnosis of Down's syndrome on phenotypic grounds is usually possible immediately after delivery.  It is essential to inform the parents, at least of your suspicions, as soon as possible after delivery.

The Delivery Suite diagnosis of Down's syndrome should follow this plan:

1. As soon as the baby is delivered congratulate the parents on the birth of their child.
2. Advise them whether the baby is healthy or not and explain any immediate resuscitative procedures you are performing.
3. As soon as third stage is complete and the baby is stabilised, ensure that you can have some time alone with both parents and the baby. Many parents will already have sensed an apprehensive atmosphere in these few minutes. A midwife who has been involved with the delivery may be an invaluable support.
4. State your clinical diagnosis and, if necessary, your degree of certainty. An opening statement could be: "She looks very healthy but I have some news for you that you might not have been expecting. Your baby has Down's syndrome." You should be touching the baby as you say this and using her name, indicating your acceptance of the child. No new parent wants their doctor to treat their baby with repugnance.
5. After dealing with any immediate denial statements from the parents, it is necessary to evaluate their understanding of the diagnosis ("What do you understand by the term Down's syndrome?"). It may become evident that they have little knowledge about the condition or they are weighed down with myths and misunderstandings. These should be corrected carefully.
6. It is impractical to fully educate the parents of a baby with Down's syndrome immediately after delivery. Enough information should be given so as to answer their immediate questions and support them until later in the day when more detailed discussions can take place. Immediate information should include a synopsis of the aetiology of the syndrome, a defusing of either parent "blaming" the other, and a description of investigations and procedures which are necessary to fully evaluate the child's health.
7. A complete discussion of the diagnosis should take place once the parents are at least partially recovered from the immediate stress of delivery, usually within twenty four hours. By this time there will be a barrage of questions which will need to be answered accurately and adequately. Every effort should be made to have both parents at this meeting. Again the child should be present as the focus of the discussions and should be held by the parents. It is still too early to overload the parents with every minute fact so there is a need to be sensitive to their particular rate of uptake of these new and complex concepts.
8. Do not try to be to predictive. It is nonsense to try to foresee the future for any child with accuracy. Perpetuating myths such as "at least he'll always be loving and enjoy music" is inexcusable. A "broad brush" picture should be painted which recognises every child's capacity to develop individually.
9. Family and friends can be a source of great support but they may also need information and education. The Down's Syndrome Association offers ongoing support to parents of babies with Down's syndrome, including support from parent who have had a child with Down's syndrome.
10. It may be helpful for relations to bring in photos of the parents as neonates. This allows the parents to compare the baby's facial characteristics with their own and see that it is their baby, not a "Down's baby".
11. Most doctors understand the parents' need to have time alone but also to feel confident in approaching the doctor at any time for more information. An open-door policy is essential. When a case of Down's syndrome is delivered, a child is born. This simple fact is so often overlooked in the storm of emotional upheaval that the new mother and father are rarely congratulated on becoming parents. One mother was even sent an "In Sympathy" card the day after she delivered a healthy baby who had Down's syndrome . Less than thirty years ago some Australian doctors used to advise their patients to place their Down's syndrome babies in institutions and tell their relations they had been stillborn. Although this sort of approach no longer exists, very occasionally the parents of a newborn with Down's syndrome will decide that, for whatever reason, they are unable to accept the child. In this situation the options include foster care or adoption and it is obviously not a decision to be taken lightly. The doctor's role is again that of an informed counsellor, not a judge.
    
    The process of coming to terms with having given birth to a child with Down's syndrome has been likened to the well-known grief reaction which occurs after the death of a child. Stages such as denial, anger, acceptance, for example, are recognisable and parents are said to be grieving for the loss of their expected "perfect" child. While this view has some small merit, it fails to address the long term and varying nature of the readjustment process in the case of the family of a child with Down's syndrome. After all, the child has not died.