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. Wonderful news!  

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


"Oh.... "



Baby Natty 

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.


Try our conversation starter cards from Fink


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 clich├ęs

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



https://www.blogawardsuk.co.uk/ukba2018/entries/downs-side
Vote 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.


A Makaton Nativity Play that Includes all Children

Mum of Jacob and Primary School teacher Rebecca Thompson created this wonderful new Christmas resource a couple of years ago that would benefit all early years settings or SEN classrooms. It comes complete with Makaton symbols. 


This Season she launches a sequel, Gold Star Inn.

New Makaton nativity play

When my son, Jacob was about 14 months old our speech and language therapist recommended we started to use Makaton to help him to communicate.  Desperate to do anything that would help his development my husband and I enrolled on a two-day training course and our signing journey began.

Honorary Doctorate for Sally Phillips for A World Without Down's

A doctorate is usually gained after years of university-based slog, immersing yourself in research, living amongst piles of books and coming up with ground-breaking ideas that might impact on a wider audience.

This week, one of the nation’s funniest comedy actors, Sally Phillips who is currently co-presenting BBC Radio 4’s Museum of Curiosity, had an honorary doctorate bestowed upon her by the School of Social Sciences at the University of East London (UEL).

Sally Phillips receives honorary doctorate for A World Without Down's

British Citizen Youth Awards for Mia and Natty

Down's syndrome ambassadors Mia and Natty are to receive a BCyA

We are enormously proud, excited and honoured to announce that our girls Mia and Natty have been selected to receive a British Citizen Youth Award



We heard a couple of weeks ago (there were many tears and squeals) but the news has been under embargo until now. I think Grandma almost burst trying to keep it to herself, but well done for managing it Pearl! 


The girls were nominated by Learning Disability Nurse Helen Laverty and myself because it means so very much to us to be able to show the girls how proud we are of all the work they do. 



Simply Be Yourself: A New Era for Mia

If my life were a corny film, this would be the moment the footage blends to slo-mo... Abba would start singing 'Slipping Through My Fingers' in the background, and my teary eyes would steam up the camera lens.

And although I do wish I could press pause on our girls growing up at times, this is not a film. This is real life. 

Natty develops at her own gentle pace whilst Mia appears to be growing into a young woman at lightening speed.


Back in the day: They grow up in the blink of an eye!

Every few years the change in our girls seems to suddely hit me. I vlogged 4 years ago about the deep feelings wrapped up in their favourite clothes; the ones you can't quite bring yourself to give away because they were worn for key moments in time and almost have the memories woven into them.

Somehow realisations such as this seem to occur during the Summer months, and this school holiday was a wake up call for me. We began by clearing the decks, taking outgrown toys and way-too-small clothing to the charity shop.

The sun, fresh air and exercise too mean that the grow chart marks on the kitchen wall lay testament to their physical growth and spending so much more time together as a family than usual, brings home the elements of your child that you perhaps miss when they are at school.


But it was the difference in Mia that struck me the most

Suddenly this young woman came out of her shell, became more noticably confident and independent, learnt life skills like brushing aside the mean girls at school and staying true to what she knows is right. 

I watched her become more comfortable in her skin and grow and glow with her newfound understanding of the world. 


Having fun together in the gorgeous Simply Be SS17 collection.
Featuring the tropical print Fantasie Swimsuit, turquoise Sunseeker Cross Front Plunge Swimsuit,
Magisculpt floral swimsuit and blue Panache beach dress.

She became really good company; someone who took my swimwear for her own, made me cups of tea, was happy to watch comedy films together, share a giggle and try new skills.


Expressing ourselves through Graffiti @UrbanGypset

Throughout the school holidays both girls faced their fears and tried activities from kayaking to scuba diving, flowrider to graffiti school for the first time. We in turn learnt to let go a little and trust in the benefits of allowing them both to take calculated risks, difficult as it always is to do. (Read Playing it Safe or Brave Experiential Learning here.)


Sometimes its easy to focus on your child with additional needs, and forget that the sporty, strong, neuro-typical child needs just as much nurturing and confidence-boosting. 

Letting go: Natty tries the Flowrider!

So I want extend a huge thank you to clothing company Simply Be for gifting some beautiful swimwear to us*. (I say us, it was intended for me, but was nabbed by Mia and she looked confident and amazing in it.) 

Bright, trendy and cheerful enough for a teen, yet comfy, modest and practical enough to wear under a wetsuit or for sport, as well as flattering and supportive enough for my *ahem* needs. 

We also opted for a navy lace cover up, proudly made in Sheffield, which I think would be equally lovely worn as a tunic over jeans with a camisole underneath. 

Did you also know that some Simply Be items are available from a size 8 up to a size 34 and they stock everything from shoes, to jeans, dresses, lingerie and accessories. 

It was a wonderful way to spoil Mia a little and celebrate her individuality, as well as giving her some much-needed attention. 


Mother daughter moments with Mia


*****


*We chose the Sunseeker Cross Front Plunge Swimsuit in turquoise, the tropical Fantasie Versaille Control Swimsuit and the Magisculpt multi-coloured Swimsuit as well as the supremely practical and gorgeous Panache Navy Sun Dress. Items may now be in the end of season sale, so grab a bargain today and browse the AW17 collection.


Swimwear for all at Simply Be

We were sent the clothing in order to review the Simply Be range. #ad

Read about Daddy Downs Side Up's new wardrobe from Jacamo here. 







Tips and Contacts for School Pupils with Down's Syndrome

It's that time of year when many of you are preparing your children for a new term at school.

Tips for school pupils with Down's syndrome

I think back to the time Natty came to the end of her pre-school years and remember the stress and worry, the form filling and meetings, all mixed together with pride that she was making this huge step for the first time. I remember a lot of tears and late nights and the invaluable support of many professionals.

Whether your child is starting at mainstream or special school, you will want to get through this process as smoothly as possible to ensure the right package of support for your child.
So here are a few tips and ideas that worked for us, as well as some invaluable support groups that you can consult for advice tailored to your child's needs, whatever their stage of schooling.


Jacamo Suits Daddy Downs Side Up to a Tee


Bob test runs the SS17 menswear collection from Jacamo

Daddy Downs Side Up is a rare sight, seldom seen in front of the cameras save for the odd display of Dad dancing on a Friday evening during Chatty Natty live on Facebook (watch his catwalk appearance below). He is more often making his influence felt behind the scenes.