But within seconds you are told that the baby has Down's syndrome.
There follows a mixture of disbelief, shock, stunned silence, anger, hurt, disappointment, perhaps a feeling that a sixth sense told you so or a desire to 'fix things'. Maybe perhaps if you are young you just don't understand and those of us who are older in years might have a clear visual image of what we expect it to mean based on stereotypes.
However, if you already know and love someone with Down's syndrome, you will have a sense that this is not the end of the world, that you will gently guide and support this family.
So what do you say and do?
Before Natty was born I had 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 immediately following Natty's arrival. This is 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 are experiencing as onlookers, the parents will have already gone through them 100 fold. Yes, all of those feelings.
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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 and cooked meals during our never-ending trips to the hospital. Family drove through the night to meet her, also in shock, but there for us all.
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 and knowing that you care will help.
|A shaky start for Natty in the Special Care Baby Unit
2) Congratulate the family on the arrival of a beautiful new person in the world!
My husband popped the cork on the bottle of bubbly we had bought in advance of our baby's arrival. 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 please!) and a small gift for the baby to have near her if she is in hospital, buy a 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 she has a name yet, how much she weighs, how the birth went, in fact anything you would ordinarily ask any new parent.
Our neighbours bought us a gift of a beautiful rose to plant in the garden, called 'Congratulations'. It has survived house moves and harsh Winters and still makes me pause for thought whenever it blooms.
3) Be realistic
When people acknowledged the challenges ahead of us and our early 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 possibly 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." was one I came to trust the most.
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." was 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 could have paid for a lifetime of private Speech and Language Therapy for Natty.
In fact 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. Each family will work at their own pace.
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, prefering instead to make friendships with those who would have been in my life regardless of having a child with Down's syndrome or not.
|Our book for children I Love You Natty
4) Avoid outdated language and clichés
Just say the baby 'has' Down's syndrome and avoid outdated terms which shall remain unmentioned here.
She is a baby first and foremost. She 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.
She is in the here and now. Don't ask endless questions about ante-natal testing or refer to the idea that perhaps she shouldn't have been born. (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 is hard to swallow...the subtext being that if we had, she wouldn't be here of course.
And as for being musical and loving... just come round and listen to Natty sing along to Little mix at the top of her lung's capacity these days, you might just change your mind!
For unbiased advice that covers all bases, you can't do better than read the free Start It Right leaflets published by the Down's Syndrome Association.
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 jovial 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."
|Natty's first taste of breastmilk whilst in Neo-natal Intensive Care
So breastfeed I did, the same way I fed her sister.
It took 3 months before the naso-gastric tubes came out and what felt like a 24/7 expressing regime, but we mastered it together, Natty and I.
The second was from an acquaintance who (perhaps speaking from personal experience) offered, "You don't have to keep her you know. You can just say goodbye, nice knowing you..."
I might have been waivering on whether I could cope or not, but this made me realise that I wanted to give it my best shot and that regardless of my shock, I didn't want to watch someone else become my baby's mother.
I promised my baby at that moment to do the very best I could for her at all times. Sometimes it isn't perfect, but it is always my best.
The birth of any of your children should not be by far and away the most challenging day of your life.
But for so many of us it is. I wish with all my heart I could go back in time and re-live that day, knowing what I know now. I can't of course, all I can do now is share our story to make things better for others, to buy them precious bonding time with their newborn babies.
Simply the right words, actions and attitudes has the power to set new families on the right path.
|How language shapes our thinking: Hayley speaking at TedxTruro. Photo @VerityWestcott
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 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:
- As soon as the baby is delivered congratulate the parents on the birth of their child.
- Advise them whether the baby is healthy or not and explain any immediate resuscitative procedures you are performing.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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".
- 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.