Love From Uncle Carl: A niece who has Down syndrome

Uncle Carl holds Natalia at her naming party.

*This post was first published in 2013. Natty is now 14 and the pair are still close.

Well where do I start with this blog post that my sister asked me to write?

It seems hardly possible that the next few paragraphs will summarise 5 years.  The time has passed so quickly but I can still recall some of the early events as if they were yesterday….

The lead up to Natalia’s birth was, I imagine, as typical as any family.  We were all super excited with the prospect of another member joining us and I was excited about becoming an uncle again.  Many trips were made to my sister's house to help out looking after Mia, and we enjoyed planning for the future over many meal times.  

I will start my story from when I first heard the unexpected news...

Bob phoned me on my mobile and I was sitting at my desk at work. It was around 3pm and I remember him saying that Hayley had had the baby, she was a girl.  And in his very typical softly spoken voice, which I can still hear to this day, he said she had Down's Syndrome.  My first reaction was disbelief and I questioned his comment, almost thinking he was joking.  When I look back, I realise how silly this was, but now feel that my reaction was because this sort of thing happens to other people…. (4 years previously a work colleague had a son with Down's and I remember vividly thinking I hope that doesn’t happen to me.  I moved from the company and so did not follow the progress of his son.   My perception has obviously changed since then.)

After putting the phone down from Robert I remember feeling in total shock. I stayed at work for another hour at the most and drove home.  On the way home one of my closest friends called me, as usual for a chat during our commute.   He asked how I was and I attempted to tell him that my sister’s new daughter had been born with Down's Syndrome, but I couldn’t.  I burst into tears and just couldn’t talk.  The feeling was of disappointment I guess, and immense worry for what the future would bring.  This child was not 'healthy', or 'normal', which is what everyone says when a baby is born.  We have a disability in the family.  These were the thoughts running through my mind.  When I think back this was purely because I knew nothing about this condition and so I was speculating…  My friend tried to chat but I ended up pulling over and putting the phone down.  I sat in a layby until I could control my tears and then drove home.

Down's Syndrome: Sally smacks medics between the eyes with screening truths

Sally Phillips addresses 4000 at the Royal College of Gynaecologists World Congress 2019

Sally Phillips is one incredible woman who has endured more than her fair share of front row hecklers, not just as a comedy actor, but also when she created the brave and thought-provoking BBC Documentary A World Without Down's with film maker Clare Elizabeth Richards. It got everyone talking about the thorny topic of screening. And more crucially the even pricklier topic of 'screening out' babies with Down's syndrome.

"The right words at the right time 

to the right people"

3 years on and Sally's film afforded her the opportunity to speak to 4000 obstetricians and gynaeclogists from all across the globe. I am proud to be able to share the transcript below. 

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 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

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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.

Fate: Reunited with the Nurse Who Changed Everything

Just over ten years and a few weeks ago, our youngest daughter Natalia quietly and swiftly made her entrance into our world. A gentle birth, a soft soul and a rare delicate beauty came together that day. 

Yet all around us, and her, raged a kind of storm. Turbulent emotions, the whispering winds of ignorance and a heavy weight of worry filled our hearts. 

Reunited with the nurses who changed our lives

The identification of Down's syndrome and a heart condition was a shock to us, something we weren't expecting, or at least had shut from the consciousness of possibility. 

Caroline Playle Reviews Resource for New Parents: Down's Syndrome

Review of Talking About Downs Syndrome Cards

2015 / Lisa Warner 

I’m excited to share this lovely review with you all of Hayley Goleniowska’s Talking About Down’s Syndrome Conversations for New Parents by Caroline Playle.

Caroline Playle is a Mum to three children. One of whom has Down’s Syndrome. When Seb was born she was shocked to be told he had Down’s syndrome. She knew nothing about the condition, aside from outdated assumptions and stereotypes, and was full of unnecessary fear of what the future had in store for her family.

The reality could not be further from that vision. Caroline and her family lead a typical life together, facing the same joys, wonders, challenges and experiences as any family. Caroline started sharing snapshot’s of their lives together to show that Seb is a typical six year old who attends mainstream school, loves reading, football, chips and ice-cream and hates having his hair washed. Caroline shares that her son is a reflection of his family and upbringing, he is not a list of characteristics in a textbook and he is more like their family than anyone else with an extra chromosome 21 . 

What I love instantly about these new Fink Cards is their simplicity. The bold, confident colours and clear font makes them very approachable.

When I was told my baby had Downs Syndrome I threw myself into researching the condition. It was utterly overwhelming, so much information to take in at the same time as becoming a new parent. These Fink cards are absolutely perfect, they are beautifully concise and the card format means they can be taken in small chunks and you choose when and what feelings you wish to explore as and when you feel ready to take on more information. Plus we all know that talking helps with coming to terms with an out of the blue diagnosis. These cards encourage talking in a really gentle way. I can imagine these being so useful at support groups of parents with new babies, getting to know one another and sharing their experiences.

Best of all these cards are about YOU, YOUR baby and YOUR feelings. They are not telling you what will or will not happen, they are not filling your thoughts with all sorts of scenarios that may never come to fruition and they are not limiting your child or your child’s ability. This for me is the genius part of the idea. These cards allow you to explore your thoughts whilst keeping the focus on you and your child and not anyone else with Down’s syndrome.

My biggest regret when I was told my son had an extra chromosome 21was wrongly seeing him as “Down’s syndrome” instead of seeing him as my son. These cards will go a long way to allowing parents to take on board how they are feeling and where they are heading without the unnecessary fear and pressure of a stereotypical idea of what they might otherwise have thought lay ahead. I have no doubt this resource will go a long way to making sure new parents facing a diagnosis don’t miss out on precious, early moment by fearing an outdated or unknown future.

A really fantastic resource for any new parents faced with a recent diagnosis, their families, and medical and health professionals. I have even found them useful in exploring my own feelings, 7 years down the line!

For more information about Caroline please visit her Blog or find her on Twitter and Facebook.

You can order sets of the conversation cards direct from Fink, priced £14.99.

Resource for New Parents: Talking About Down's Syndrome

National Portage Association Back New Resource

Fink Card Review by Kerry Bailey of the National Portage Association 

Talking About Down’s Syndrome: Conversations for New Parents by Hayley Goleniowska and Fink Cards

Talking About Down's Syndrome: Conversations for New Parents

I was honoured and delighted to be asked to review the new fink conversation cards Talking About Down’s Syndrome, Conversations with Parents written by Hayley Goleniowska.

"Q: How did you celebrate your baby's arrival?"

Talking About Down's Syndrome - Conversations for New Parents

I am more than just a smidgen excited to be sitting writing this blog post next to a cardboard box brimming with colourful, shiny, inviting packs of cards. The cards are not part of a game. There's no element of snap, no quiz questions. There is no competition or race against time.

The Fink conversation cards are bright and inviting

Lose the Label campaign for Person First Language

The poster says it all. 

I am Natty: a little girl first and foremost, with my own unique take on life. 

Yes, I have Down's syndrome, it's an important part of who I am, but it does not define or limit me.

I am not 'a Down's'.

I am Natty.

A few months ago I came across the Lose the Label poster campaign on Facebook (do pop over and join the growing community there), run by the lovely Michelle Clark. It is genius in it's simplicity. She features a wide range portraits of children, babies and young adults all living life to the full, all who have Trisomy 21. In 3 simple phrases she cuts to the heart of what we all strive for for our young people, that they must be taken for who they are, unique individuals as different as snowflakes, and she makes people stop and think about the generalisations and stereotypes they may have believed to be true of those with the condition before. I knew straight away that I wanted to be involved, as Michelle shared my approach to change. Here's why:

"Within hours of Natty’s birth we received the diagnosis that she has Down’s syndrome and a heart condition.  I’m sure many of you reading can relate to the crushing disbelief, the angry grief, the gut-punching shock, the darkest of fears that makes it hard to even simply breathe in and out.

When I look back at that snapshot in time, I understand how, rather than seeing Natalia for exactly what she was, a beautiful yet vulnerable baby, our precious second born daughter, a little sister for Mia, she became in our minds a set of medical complications, a set of symptoms, and worse still, a collection of preconceived stereotypes based on the fleeting glimpses into the lives of adults with Down’s syndrome I had seen in my youth. Our baby became in that moment, Down’s syndrome personified. A one-size-fits-all label.

Looking back with shame, from my privileged current vantage point of knowledge and love, I understand that in many ways this is how society and the medical profession had presented Natalia to me. My own fear and ignorance fed into the myths, but it was my husband who broke through all the labels, simply saying, “She is our daughter, and she will be the very best that she can be.”

Now, 7 years down the line, and Natalia refusing to conform to one single stereotype that had entered my mind that day, I pour as much energy as I can muster into telling the world that our children and young people are all unique individuals with fully rounded personalities who deserve the same rights and opportunities as everyone else. I shout from the rooftops that they take on the values and traits of their own family members and contribute much to the communities around them. Not just ‘cute’ or ‘musical’ or ‘loving’, their voices must be counted. I know now just how wrong I was and I want the truth exposed.

When I came across the inspired work of Lose the Label, I knew immediately that it was something I wanted to be a part of. For together, if we can remove the fear from the hearts of just one new set of parents, to buy them bonding time with their newborn it is worth it. Or if we can shift the thinking of one member of society that will lead them to be more inclusive, then we have improved the life of someone somewhere with Down’s syndrome. And if we can make people stop and think before they label our children, then we have removed one more barrier before them."

If you have a photograph of your child with Down's syndrome that you would like to submit to be included in the campaign, you can write to Michelle via her Lose the Label Facebook page. 

Images must be high resolution, good quality, landscape and have space for text to one side. 

You might like to read Musical and Loving Aren't They? on the subject of stereotypes and labelling. 

Or Exposing quotes that reinforce Down's syndrome myths: the Truth over on Special Needs Jungle