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 clich├ęs
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 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 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.


Watch Hayley reading this blog post here:




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.


77 comments:

  1. I think it starts with the nurses. I remember the nicu nurse saying something like - for a normal child she should be doing this but like yours with down syndrome... After I gave her a quick lecture about how my child will be held to the same standards as my other children.. She was speechless.. I was lucky to know early in my pregnancy so I was not surprised. It starts with the nurses! I need to set time aside to volunteer at the hosp for new mothers with children with ds. I think it would have been helpful to ask someone with real experience my questions.

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    1. Yes, it starts with the professionals. And happily they are they people I have been asked to speak to next...

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    2. When I had just given birth to my daughter with Downs Syndrome, I remember my community midwife say to me ' dont worry shes lovely really' x

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  2. Very helpful... I enjoyed reading that, it made me think a lot. Love.

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  3. Oh ,difficult to read but a necessary poke in the eye for the health care professionals. I suppose it is the same brutality displayed when people are told that they have cancer or that their loved one has died,when they race breathless through traffic to be told that they are too late.Compassionate, non judging angels are what we need ,people who know how to speak volumes with not a word uttered between them. Some of the words I received were:
    Paediatrician shouted'STOP CRYING! WHY ARE YOU CRYING? HE PROBABLY DOESN'T HAVE IT'.
    Community Midwife. ' I don't see why you are upset it isn't a problem.'
    Friend.'Why don't you give him away,you don't have to keep him'.
    .....and so on and so forth the tide of words washes in and out like sea foam, tilting and turning grains of sand slowly revealing tiny glints of gold and sea glass and all the time we swim towards the shore ...........

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  4. My heart sinks when I read how badly we as a profession impart news which has a profound effect on people and can affect their whole approach from then on. Beautifully written as usual and the kick up the butt I needed to get on and pass the details if this site to colleagues including my neonatology friend and community paediatricians thank youxx

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    1. Thank you Kath. A yesr on and I have been asked to talk at a conference of Doctors and Carers. Gently changing the way things are is all I want. Thank you for your support. x

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  5. I stil remember with horror being publicaly critisised in my first few weeks in my first job by my then line manager when asked how i would respond to the news that someone had had a baby with downs syndrome - i said i would of course send them the cutest congratulations card i could find....she told me how insensitive i was and i needed to think a bit harder if i wanted a future working with people with disabiliities and their families.... I stil feel the anger i felt at how wrong she was!,, surely the celebration of the arrival of a precious life is always the place to start- thanks h for this post-

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    1. Debs, you are a rare gem amonst professionals. You can change the way others thing and act as surely as I can. Love to you.

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  6. Such heart-felt comments, both from parents and those in the medical profession. Thank you all.

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  7. I was honoured to have had a son who was born(1991) with mutiple complex disabilities, he was 4 before we had a confirmed diagnosis. Through him our family have met so many other families who have/had children with a wide range of diagnosis, downs syndrome included, it has been a fantasic roller coaster ride that we wouldn't change, My son died on his 19th birthday and i wouldn't have considered a magic wand (cure) as he wouldn't have been the Nathan that we knew and loved. He taught us many priceless lessons on valuing every individual for who they are.

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    1. Thank you so much for sharing your precious story. Yes, our children are our teachers x

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  8. Our Granddaughter is prooving She is just as intelligent as the next child, thanks to all the help,love and support of our Daughter, Son-in-law and Big sister and family

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    1. So lovely to hear a proud Grandmother speak so lovingly x

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  9. Thank you so much for writing this - it is so comforting to read and I'll be posting it on my facebook profile as I think it'll help friends and family understand what we went through. My little boy is 16 months old and so much of this rings true. And yes, I DID have the screening and screened as low risk and so the shock was all the more. The worst moment for me was when they told us by saying, "your baby has unusual facial features" and then mentioned Trisomy 21 (although we both knew what this meant in layman's terms) before saying Down's Syndrome. We did receive one card of condolence which was terrible but all the rest were very supportive although quite late in appearing. We had the private room right at the back of the maternity ward and it was very difficult walking through it to the neonatal ward and seeing everyone else's cards, flowers balloons when we hadn't received a single thing. I would also like to add that I find it really irritating when people say things like, "well, it's going to be very challenging"; or, "well, of course, his development will stop totally one day", or, "we all felt very sorry for you". Yes it has it's challenges, but it's not the end of the world, and more to the point, I don't need someone else who doesn't have a disabled child to point out the harder facts of life to me. And also we don't want pity! Anyway, rant over.

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    1. Thank you for this. Walking past the smoking Mums on drips outside as I went in to visit Nattyy was my harderst memory of all.

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  10. I feel so honoured at the honesty of those who are sharing.
    Please feel at liberty to show this article to friends, midwives or other medical staff you feel would benefit, be interested or who would use it to train others.

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  11. Your post and the comments brought tears to my eyes - the love and honesty from all those mentioned is inspiring. Having met your gorgeous family around three years ago (on a fab beach in a fab part of the world!) we were struck by what a tight knit and loving family you are. Not in realtion to Natty's DS but because of the life and laughter, warmth and generosity we saw in you all. Your post is incredibly well-written and I am delighted that people are noticing it, (and you!) and are recognising the input and support that blogs like this offer others.

    I'll be buying The Sun tomorrow!

    Good luck with it. Sending love to you all, with a special hug for Natty. x

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    1. Thank you Amanda. Love from us all x

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  12. Hi there - your girl is beautiful. My late sister, who died of kidney failure at the age of 32 in 2004, had learning and physical disabilities. There were some stupid comments, all through her life, but the one that sticks in my mind is "Ooh, they do love animals, don't they?" - said by someone who was watching sis stroke the nose of a pony. Your 'they're so musical' comment reminded me of that... Ummm.

    There are cliches about people with Down Syndrome. The most persistent one is that they are gentle and loving - like labradors, perhaps? My friend Bev had DS and a filthy temper when she put her mind to it. Not labrador like but a feisty, vocal human being with her own opinions.

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    1. Sorry to hear of your great loss Hannah. Thank you for sharing.
      Yes, our kids are as feisty as the next! Not a labrador in sight x

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  13. This a lovely post. I was quite happy to have the phone numbers of people who had been through the same experience as us but there was no way i was going along to any group until i had managed to get out the house and get along to the breast feeding support group that i had planned to go to thro my whole pregnancy. Our breast feeding councellor was a fantastic support to us and we managed to breast feed from 8 weeks,having an older child that had breast fed told my i could do it so i just had to teach Little L. I had a call this week to see if i want to train as a peer support worker for breast feeding - too right I do!

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  14. Thank you so much for sharing your experience and not only for saying what didn't go so well but also for sharing what you would find helpful. As a health professional I want to know how to help people who I meet in very difficult situations; I know we do sometimes get a bad press but the vast majority of healthcare professionals went into their professions because they care and they want to do their best. As you have said everyone is an individual and will have their own preferences but I found this really helpful. I plan to refer colleagues and peers to this and anyone who I find may need it.

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    1. Oh, thank you so much for taking the time to read and reply. All health professionals are humans too, and together we just need to work out the most useful way for us all to get off to the best start. Please stay in touch and keep ejoying the blog x

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  15. Still reeling from reading those negative comments at the end of your post, especially the one from a midwife. Looks like you've confounded anyone who might have had a negative thought or comment to hand though, good on you!

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  16. Hi,
    Your speech today at BritMumsLive was fantastic. I would also like to thank you. A few weeks back my friend suffered a very premature birth of her second child and has a whole string of complications. The very same day she delivered her baby I went shopping and sent her and her little boys presents. I was very unsure at the time but having listened to you today I know that I did the right thing. You were incredibly brave today - Well Done.

    MummyandMimi

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    1. You definitely did exactly the right thing. Thank you for sharing your experiences. I was so nervous and it means a lot to know it was worth it!

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  17. A very moving post and so nice to hear it in your own voice today at Britmums Live, I spoke to you in the foyer before we left and just wanted to reiterate how amazing you are and how beautiful Natty is. Congratulations and all the best for the future xx

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  18. A very moving post and so lovely to hear it in your own voice today at Britmums, there wasn't a dry eye in the house! I spoke to you in the foyer before we left and just wanted to reiterate how amazing you are and how beautiful Natty is. Congratulations and all the best for the future xx

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    1. Thank you so much for your support x

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  19. Everyone should read this, and many of the points also apply to other disabilities, disorders and premature babies - when mine was born at 26 weeks, I was only given a handful of cards, and NO baby clothes. I don't think anyone expected her to survive, yet here she is 15 years later, albeit with disabilities x

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    1. And whether a child survives or not, they deserve love through gifts and well wishes don't they. Thank you.

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  20. This is a great post. It's the first time I've been to your blog. As a disabled person and a campaigner I totally support what you are saying. After all the birth of a child is a happy event. Yes, if the child is disabled things are going to be tough and challenging, but then life is tough and challenging for so many people for so many different reasons, but life is also full of fun, love and happy events too. Why should that be any different because the baby is disabled?

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    1. Thank you. This means a lot to me.
      I recall a friend saying to me at the time of Natty's birth that ' all life was precious'. It turned out she had been trying for a baby for 9 yeasr without saying anything to us. She was so right.

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  21. So lovely to have been there to hear you share this.

    My husband is a neonatologist so has close experience with parents experiencing this - I've already shared it with him and sending the link now.

    Hugs

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    1. Bless you, that means such a lot. I am beginning to talk to the medical profession and would love to read this to them too. So many medics get it right from the start...sadly others don't. Thank you x

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  22. I would love to share my story with those on what the Dr should not say....
    I had a wonderful baby boy in Nov 2010, he is my 5th son and I couldn't be happier to have him my life...I knew the instant they laid him on my chest he had downs. I had just had my son and was getting settled in my hospital room and the Dr that was on duty for the nursery came in looked at me while I was cuddling my newborn son and point blank asked me if I wanted to keep him since he had downs syndrome after a stunned look I looked at the Dr and a few not so nice words came out of my mouth for which I am not proud of but I was in shock being asked that question.. I told this Dr that he was my child I didn't care what was wrong with him he was mine and I loved him . To all the new parents out there with a child that has Downs syndrome love your child hug your child and always remember that is your child... Today my son is 20 months old starting to walk counting coloring with crayons feeding himself washing his own face and hands, he has a vocabulary of over 20 words already. He can use a remote control for our T.V., as well as make everyone who meets him fall in love with him .. I have done this with out help from therapist or any help from Dr's .. There is hope...
    REMEMBER GOD GAVE YOU AN ANGEL TO LOVE AND TO BE PART OF YOUR FAMILY ... My son Noah is spoiled by all 4 of his brothers not to mention my husband and myself... Don't let any one tell you that your child is not Normal ... if they do look at them and asked point blank What is Normal ?. Noah is the best gift that God or anyone could have given me ..
    Remember YOUR CHILD MIGHT HAVE DOWNS BUT DOWNS DOESN'T HAVE TO HAVE YOUR CHILD .. I tell people who ask me about my child having downs syndrome this .. yes he has downs but downs by no means has him ...
    MAY GOD BLESS OUR ANGELS WITH DOWNS SYNDROME WHO LIVE WITH US IN OUR HOMES HEARTS . There is hope always

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    1. Ida, I am crying reading this. I cannot believe the medical profession in a county as advanced as the States is asking if you want to keep your child. (All foul responses to that are forgiven.)
      Your bravery, pride for your son and determination to do the best for him despite little help makes me so proud of you. Keep up the good work darling x

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  23. Your reading this was the highlight of the BritMums Live conference for me. You read it just perfectly, you say it just right, and you have clearly coped with other people's awkwardness so well. Thank you for writing this, and it was lovely to meet you. I'm sorry I gushed all over you!

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  24. I stopped by your blog after meeting you in the toilets at BritMums Live! We mused about the gent's splashbacks together!
    I just want to say that I love how you have named your blog in such lovely, positive terms and you were a delight to speak to in the few short minutes we chatted.
    Your baby on this post is beautiful (as you already know!) and she is blessed to have such a lovely mother.
    I hope to see you at the next blogging event!
    Nadine
    x

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  25. Hi - your post was beautiful the first time I read it and even more so when I heard it outloud.

    My daughter was diagnosed with hip issues this year which has led to surgery and 3 months in a spica cast; although very different circumstances I found it very hard to cope with reactions and people not knowing what to say.

    A lovely person left this comment on my blog which warmed my fingers and toes even though I am not particulary religious...

    Since life is not easy sometimes, a story by Erma Bombeck
    The Special Mother
    Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year 100,000 women will become mothers of handicapped children. Have you ever given thought to be selected according to what criteria the mothers of handicapped children?
    I visualize God hovering over the earth, and his instruments for propagation with great care and deliberation. He observes, then his angels in a giant ledger.
    “Armstrong, Beth, son, patron saint. Matthias.
    Forest, Magerie: daughter. Patron saint: St. Cecilia.
    Rutlegde, Carrie: twins. Patron saint ? Give your straight, it is usual that is cursed. ”
    Finally, he mentions a name to an angel and smiles. “Give her a handicapped child”
    The angel is curious: “Why this one, oh Lord, she’s so happy?”. “Exactly,” smiles God. “Can I give a handicapped child a mother who does not know laughter? That would be cruel.”
    “But has she patience?” asks the angel.
    “I do not think they have too much patience or she will drown in a sea of self pity and despair. Overcome the initial shock and the anger has died away, she’ll handle it. I watched her today. She has a sense of autonomy and independence that is so rare and necessary in a mother you understand. the child I’m going to give her has his own world and they must make it live in her world, it will not be easy.. ”
    “But, Lord, I do believe they are not even in you.” God is smiling.
    “That’s nothing, that’s okay. No one is perfect. She has just enough selfishness.”
    The angel gasps. “Selfishness? Is that a virtue?”
    God nods. “If they do not sometimes be separated from her child, she’ll never survive. This is a woman I will bless with a non-perfect child. She does not realize it yet, but it is to be envied. She will never a spoken word take for granted. Never a step ordinary. If your child for the first time mom says she will be present, that they witnessed a miracle. When she describes her child a tree or a sunset, it is him so to see how few people see my creation it ever. I will permit her to see clearly, things I see. ignorance, cruelty, prejudice, and I allow her to rise above them. You will never be alone. I’ll be with her, every day of her life, every minute, because she is doing my work as surely as if they are here next to me. ” “And what about her patron saint?” asks the angel with drawn spring. As God smiles. “A mirror will suffice.”

    Much love - and again well done for Britmums x

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  26. I'm so sorry I missed you reading this at Brit Mums Live. I have tears in my eyes nevertheless. And well done you for publishing this comment on the health profession, those that should know better unfortunately rarely do. x

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    1. Thank you for taking the itme to read it. I'm sorry so many people missed it too, but a fabulous opportunity nonetheless :) Still reeling from the experience x

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  27. Who the hell sends cards of condolences to parents (unless of course the baby has been stillborn).
    Every single birth should be congratulated regardless of any disability/deformity/disease that the baby has.
    That baby is still a human being and deserves as much love, care and support as any other person in this world.
    People can be so callous at times.
    Your Natty is adorable!

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    1. I know. Sadly I met the Mum of a premature baby who had received several. We set the record straight, one person at a time :)

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  28. Thanks for sharing your post with us at the conference. I can imagine how hard some of it might have been. There were quite a few us there who are expecting and I for one had often wondered how I'd cope if my baby didn't turn out as I'd imagined. You have given me a new perspective. You strength and courage is amazing and you are an inspiration. Continue to enjoy you blessing and beat 'the odds'. She's gorgeous :0)

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    1. I think I felt so emotional because I would never talk about such things in front of pregnant ladies. I'm sorry if I upset anyone. And yes, we are lucky in soooo many ways x

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  29. This is not only a beautiful post but such a practical one.I have learnt a lot. Thank you. x

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    1. Thank you. It might not be the same for all families, but this is what we found helpful.

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  30. You are an inspiration, I cried (as others did) when I discovered your blog at BritMums. It's interesting how a little bit of truth Can go a long way. And your blog/thoughts is now going a long way and making a difference.

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    1. Thank you for being there, listening, and crying with me x

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  31. Like others have said, I cried along as you read your post at Britmums. Thanks so much for sharing it with everyone. It was really inspiring.

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    1. Thank you for listening and reading caitlin. Sorry I made you all cry! I seem to be getting a reputaion ;)

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  32. What about say, oh my goodness what a beautiful baby? I haven't yet seen a baby who has Down Syndrome who isn't beautiful.

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    1. Absolutely :) And what is her name? How much does she weigh? Was it a good birth? All the usual things.

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  33. Hi Hayley

    I used to go to Sing and Play with you in Wadebridge and remember when Natty was born - very relieved reading this article that I didn't make any of these unwelcome comments!! I do recall how we all congratulated you and I gave you a cardy for her - she was so cute and Mia loved her so much. I recognised Mia in the Frugi catalogue and that led me to this site.

    Well done for changing perceptions - keep the good work up! Good to hear your family are all healthy and happy.

    Best wishes

    Caitlin (Mum of Dylan and Tansy, now living in Truro)

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  34. I recently had experience of this. It was someone who used to work for me who had a daughter who was diagnosed with Down Syndrome, it was a relief because she'd had abnormalities diagnosed on her 20 week scan and was told her baby was unlikely to survive. Unfortunately due to lots of work related stuff meaning I had to leave and for the moment not keep touch with work people I've not seen her but I did talk to her on the phone soon after diagnosis. What I said was "I'm sure Alicia is a lovely, beautiful little girl and I'm looking forward to meeting her." I still am and I hope that was the right thing to say.

    All kids are beautiful and a huge joy.

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  35. thank you for writing some of the things I have felt. My daughter was born with DS in April this year, we didn't know till 36 hours after birth that she had DS and my partner and I were told seperately and I was left alone in my room to cry, without anyone to talk about it, not even someone offering the usual 'lets have a cup of tea' kind of moment.

    Its one thing that will stick with me forever and when I am strong enough will raise these issues with my local hospital.

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    1. Darling Kathryn, this is not right. You should all have been together. That said, you will pick yourselves up and work through the anger and frustrations of how you were told, as we did. You will channel it into change for others.
      I am working flat out to change the way things are done in hospitals, to eliminate this kind of poor start to family bonds. Please stay in touch. I bet your daughter is absolutely gorgeous x

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  36. thank you for writing some of the things I have felt since my daughter was born in April with DS.

    My partner and I were told seperatly 36 hours after birth the DS diagnosis, he had to take our little boy to the playroom as he was getting too noisy to hear the Doctor, he came back to find me in tears and I took our son tot he playroom, no offer of a nurse to look after him whilst the doctor spoke to us.
    My partner then had to go home and I was left crying in a side room, no midwives came to check on me.
    its something that will stick with me forever how we were giving the diagnosis. when I am stronger I will do something to make sure this doesnt happen to families in my hospital again

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  37. I knew about my daughters diagnosis prenatally , the attitudes of the professionals was to say the least very negative. The results phone call was 97.5% certain for downs, there is a slot available 09.30 monday for termination shall I book you in, call was on a friday. Hours after having given birth a young midwife sat next to me telling me if I had changed my mind at any time,,even in the last week or two it could have been sorted,, I couldn't believe me ears stared bat her and she repeated "OH YEAH we are not supposed to discuss it but it happens" how I didn't murder her I'll never know.

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  38. I just watched your video on the Down's Syndrome Scotland Facebook page. Well done - what great advice! My younger sister has Down's Syndrome and I remember asking my Mum what I should say to a friend who had just had a baby with Down's Syndrome and she said, "Say CONGRATULATIONS on the birth of your beautiful baby, just like you would to any of your friends!". I remember thinking "Of course!" and wondering why I had even had to ask her, but I didn't want to say the wrong thing at a sensitive time. I couldn't ever ask for a better sister - she is caring, kind and really funny (in fact she has a really wicked sense of humour!) and a fantastic Auntie to my kids, who all adore her.

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  39. I was doing a search on the web for Visual Timetables and then started reading your article about what to say when a friend's baby is born with DS and then carried on reading ... I just wanted to share my story: we had the NHS blood test and were told we were low risk. The day after our beautiful baby daughter was born a whole team of people suddenly surrounded my bed and the paediatrician examined my baby. The paediatrican had the most dreadful bed-side manner: she asked in an aggressive way if we were concerned about our baby (thankfully my husband was there with me) and we said "no" but that I hadn't managed to breast-feed her yet. She said "so you're not concerned" (in the same manner) and then she just blurted out "your baby might have Downs". There is never going to be an easy way to tell a parent this news but this lady's way of saying it was awful. She then left with her team of people while we were left in shock. One man stayed behind to see if we were OK. As you can imagine we were not. We were told the only way to tell for sure was for a blood test to be taken but they couldn't take the blood that day as it was a Friday and the lab was closed all week-end so they couldn't do the blood test until the following Monday!!! We pressed them and they eventually took the blood that day (our baby was so small it took about three different Drs/nurses to take the blood sample). We then had to wait 8 days for the result. I had such trouble breast-feeding and our baby kept losing weight so we were in hospital for 7 days. All the other staff I'm glad to say were lovely except they were so busy they didn't have time to read our notes so didn't know that we were waiting to hear whether our baby had DS or not and at one point I just exploded with emotion as I was in such a state. Eventually just after we got her home we got the 'phone call that everything was OK. I had fallen in love with our daughter so whatever the news was there was no question about giving her up. As it turned out when she turned one and half another paediatrician diagnosed her with Global Developmental Delay, low muscle tone and hypermobility but we don't have a proper diagnosis for her. She is now 7 years old but is developmentally about 2-3 years old. She also has a non-curable stomach condition called Cyclical Vomiting Syndrome which was diagosed about 2 years ago. So it has been a roller-coaster ride right from the beginning! I was touched by what other people had written as a lot of it rang true with what I have experienced with having a disabled daughter. She is our only child and I love her more than words can say and even though life is very hard a lot of the time I know I am blessed to have been given a daughter. I wish I could stop her from vomiting as that is truly horrible but otherwise I wouldn't change her in any way as then she wouldn't be her. I have met so many wonderful professionals (excluding the dreadful woman mentioned above) and other parents along the way who I wouldn't have met otherwise. It's a hard road that we follow and people don't always know what to say (if I hear "but it could be so much worse" one more time I will scream!). Sorry I've gone on and on but it's not a short story.

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  40. OMG just read this and am absolutely astonished by the 'p.s' comments. I cannot believe people can be so horrid! We were told with my first born that we had a 1 in 100 chance of Down's and I faced some looks/criticism when I immediately refused any tests. Why is it that we are 'abnormal' because we are not bothered about such things, happy in knowing that we are blessed with our children no matter what!? I was then asked the morning of my c-section (emergency with pre-eclampsia) if I'd been told about Edwards syndrome, when i said no and asked the obvious, the doctor simply stated that it would mean my child would probably die within months of birth! Fabulous bedside manner. However have to say no matter what god had in mind for me and my child (born perfectly healthy, although teeny tiny small at 3lb 8oz, SCBU for 4wks - now happy mischievous 7yr old) it would only have been love and joy I would have had and did feel #withoutashadowofadoubt Shame we can't say the same for others. Fay aka @HenFredandFelic x

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  41. I saw this program on the bbc iplayer and think anyone who has a child with Down's syndrome (or works with them) would really benefit from seeing it - especially before making generalised comments:

    http://www.bbc.co.uk/iplayer/episode/b01qymnx/My_Life_Series_4_Breaking_Free/

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    1. It's a great programme isn't it, featuring a couple of our friends. I love that the narrator also has Down's Syndrome H

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  42. as ever a great blog, I do love you so for helping so many families I just wish you were there at the start of my journey 10 years ago I am the proud muma of a little boy who is nearly 10 who we love to bits and would never change him once again I salute you

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  43. Reading this had had me in tears, all parents are blessed as children are a gift however they are 'made'. My youngest for example is an accident prone, crazy baby but I would never change her and the insinuation people make that as parents of a baby with downs syndrome you would want to change your precious child is disgusting. My little sisters best friend at primary school has ds and this year (age21) he will be graduating from university, he has a girlfriend and is in a band, all things people assumed he would never do. Keep up the good work x

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  44. Our Gorgeous Elodie arrived in March and it took 2 - 3 days before anyone mentioned having a chromosome test, it wasn't obvious. Elodie looks very much like her brothers and they adore her! They have been fantastic as have our friends and family. It brought all of our family closer still. Elodie had to have a heart operation in Bristol to close a large vsd and since then she has been doing so well, we had her Christening last weekend and such a special day. She loved it! Her God mum named a star after her, for her Christening present so very special, just like her. She is a little star and we are all very proud of her and pleased she is in our lives.
    It is quite amazing how many people ask if you had tests during pregnancy we didn't as it would have made no difference to our decision. She is a gift and we are very blessed ! Thank you for your blog it has really helped and all you are doing to help change people's perceptions of ds.

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  45. Hayley, you and Renata are my very favourite bloggers and this post proves why. It is an exercise in what blogging is all about, pure and simple: sharing your story and in doing so, inspiring and educating at the same time.

    And you're right, Natty above all, looks just like you and her sister, beautiful inside and out!

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  46. Love this post. Love your blog. The title is brilliant!

    I am in India where I run a foundation for kids with special needs - inspired by my own daughter. (www.latikaroy.org)

    So happy to have discovered you.

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    1. Lovely to be in touch. Your speech was wonderful. H x

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  47. So nice to hear from you on my blog, Hayley! You might be interested in a TEDx talk I did - Down Syndrome makes a surprising appearance in it! http://www.youtube.com/watch?v=YftMFOcBcBA

    Jo

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  48. Sorry that this is the first time reading this, I missed it at BritMums and you have moved me deeply. Your blog is so vital to so many, it angers and saddens me how reckless and insensitive healthcare professionals can be when you most need them. This post will help so many. Thank you for sharing x

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