WARRIOR MUM - HAYLEY GOLENIOWSKA'S JOURNEY

Down syndrome - SEN @DownsideUp

Hi everybody, this week's Warrior Mum is introduced by Lesley, who is a midwife already featured in the WM series and I can assure you it's another brilliant post!

"Hayley Goleniowska is a dedicated Mother to her two beautiful little girls, Mia and Natalia and wife to Bob. Hayley shares their second daughter’s birth story ‘Natty’ who was born with Downs Syndrome. Once Hayley had experienced the grieving process and loss of a healthy child, she has evidently strived for what many of us parents do; research their child’s unique, individualised needs and has campaigned tirelessly and brought to the forefront of the disability forum and public sector, the true facts, setting aside stereotypical and judgemental public opinion of Downs Syndrome. Hayley depicts for me that parenting a child with additional special needs is enriching and challenging beyond words. Hayley shares their families love, joys and Natty’s fulfilled life via her inspirational blog ‘Downs Side Up’, that I have no doubt in acknowledging how resourceful and empowering this will be for new parents embarking on their unique journey. Hayley is also a passionate ambassador prolifically writing and sharing to help others… truly inspirational woman and family.

I immediately connected with Hayley’s story for several reasons; primarily, as the mother of 4 beautiful girls, one of which also happens to have a disability, secondly, as a professional labour ward Midwife.  Hayley’s story poignantly resonates with what I have personally experienced and equally witnessed myself in the clinical arena. Are some professionals afraid to talk openly and deliver bad news? Finally, during my career I have also found it necessary to briefly leave the rooms of vulnerable families for a necessary release and cry. Particularly, as parents unknowingly share their inner most feelings when making difficult decisions to opt for abortion with a diagnosed disability.  They do not realise their painful words penetrate my heart, how could they, and why should they? One woman said ‘I couldn’t cope with a disabled child’ and one went further to demonstrate a look of disgust, describing disabled children as filled with pestilence. 

I am a very reflective practitioner and I find reflection a useful way of dealing with comments that could have the potential to affect me. Every woman is entitled to their own opinions and the choice to abort is theirs. I always remind myself of the difficulty they are facing and I must remain non-judgemental and care for each woman and family, with the same if not more empathy. I am saddened by their fear of disability and possible ignorance, but then disability is not for everyone and I believe it takes an exceptionally strong person to help a child achieve their very best potential.  Something that enriches my life daily and teaches me the values and how truly privileged I am, to have such a gift of unique and rare beauty and love.

Hayley discusses her immediate birth feelings, following what should have been a truly amazing home birth outcome.  No doubt filled with anxiety by the emergency ambulance dash to hospital and Hayley  sadly describes her inner most loneliness and longing for some news, whilst her intuition is sensing avoidance from the medical profession as a whole. Hayley later reflects of the ‘angst’ and ‘human beings too’ of the medical profession.

In my professional capacity I strongly and instinctively believe women know something is wrong, from the facial expression and behaviours of professionals during the immediate birth contact. Staff often become overly ‘isn’t she beautiful’ as Hayley reflects on this.  Research suggests staff should make positive of a disability or disfigurement at the immediate time of birth, but this can sometimes become over exaggerated and  in my humble opinion borderline annoying.

There is no easy way to break bad news and this often has to be performed by a stranger… senior medical doctor (as per trust policies).  Conversely, I strongly believe the person who delivered Natty should be the bearer of breaking any sad news, supported by a doctor, should any questions arise that the Midwife is not equipped or medically trained to answer, such as treatment and prognosis. Their unique bond is there during the pregnancy and labour, the trusting midwife mother relationship is like no other. Care must be transparent open and honest and this will usually be valued and remembered. You may not remember everything said at the time, but you will always remember kindness and the way in which you were treated." 

Lesley Chan  RM

 

Hayley’s Journey

"I now understand the angst of those around me too, for medical professionals are also only human.  My husband said he saw him shaking in the corridor. But looking back, a gentle word from a familiar friendly face might have taken the sting out of the thunderbolt. Would I have felt differently had we been told by our midwife after congratulations, while our baby was present?"

I’m Hayley, first born to a hardworking couple in Sussex in 1969, followed 4 years later by my flame-haired brother Carl. Obsessed by horses and climbing trees, I was a more musical than academic child. I scraped into a grammar school by showing the examiner how to complete the Rubics Cube proving that kids’ fads don’t merely constitute a misspent youth.

I was the first person from our extended family to ever step foot inside a university. I went to Lancaster and studied an impractical mix of French Literature and Philosophy, but learnt the more important skills of research, independence and true friendship.

Various jobs followed, mainly teaching English to overseas students at colleges and universities. It was a job I loved, being a little bit of a stickler for good grammar despite my laid-back personality, and more importantly loving to meet new people from all over the world and learn about their lives and cultures.

I’ve also worked in a school as a teaching assistant. I was good at my job. But I now know I was not good enough.

My friends prefer to remember my hilarious stint as a voice-over artist for a premium-rate phone line which sold walk though guides and cheats for computer games. Some still call me the Cheats Mistress but that is an identity I left far behind me long ago.

You're married to the lovely Bob; second time for both of you, tell us about your early years together and the birth of your first child.

I married Bob, who works in the music biz, 10 years ago and ‘technically’ I am a stay at home Mum of 2 beautiful girls.  We planned a family straight away, a second marriage for both of us.

After an initial early miscarriage, I was so proud to be pregnant again and after 9 months of severe morning sickness Mia was born 9 years ago, beautiful, dark and strong, with a wise, knowing face that looked as if she 'had been here before'. 

Mia

She instinctively and impulsively knew what she wanted out of life, and let everyone around her know. Believe you me she’ll ‘get there’, wherever ‘there’ is.  

Mia ready to embrace the world

She is not only clever, musical, artistic, manipulative and bloomin' feisty, but the most caring, thoughtful and funny friend and family member anyone could wish for.  

Often my thoughts turn to the crisp, sun-blessed December days just before our second child Natalia’s arrival, when Mia and I planted daffodil bulbs together, enjoying every moment of Mummy and first-born alone time that would never be repeated in quite the same way. 

This was the time before our lives changed forever, the blissfully ignorant, arrogantly complacent time before we understood what life was really all about. 

You've both been handed a question mark during your antenatal checks, how did you prepare?
 
We shrugged off a 1/297 nuchal fold 'risk' (we now say 'chance' or 'likelihood') of having a baby with Down’s Syndrome as ‘not bad for my age’, (35) and clung to the notion that a healthy, clean-living, vitamin-taking woman would, of course, be expecting another healthy baby.

She came early, as I instinctively felt she would.  2 weeks early to be precise, typical for babies with Down’s Syndrome so I understand. The natural meticulously planned home birth was calm and straightforward. But a small, silent, blue baby was born on the bathroom floor, all in one easy movement.

What a shock for both of you, such a sudden birth. Tell us more about the arrival of your second child and the journey that awaited you.

What followed is frozen in time. 

The look of desperation on the midwife’s face while my husband waited in shorts in a freezing lane for the ambulance. Jovial paramedics administering oxygen to our newborn and helping me to the ambulance. The midwife repeatedly telling me how beautiful she was as I held the oxygen to her face, a face I could not warm to, could not recognise as being my own baby’s. Why did she keep saying that?

Hindsight brings sharply into focus that all these professionals instantly knew that Natty had Down’s syndrome, but none of them could, or would, tell us.

On arrival at the hospital, my husband proudly carried our baby from the ambulance to the second floor of the maternity wing. Our baby was quickly taken from us to NICU and we were ushered into a side room.  I insisted that my husband stay at the baby’s side while staff worked on her, which he did.  Bob still cannot talk to me about exactly what he witnessed and felt during the next 4 hours, save that on several occasions he can recall the initials ‘DS’ being used. 

But a strange thing happens when you are faced with what you think is your worst nightmare.  You dare not welcome it in.  You dare not let your brain begin to work out that DS of course means Down’s syndrome.  You absolutely will not let your head formulate a question to ask what is wrong, because you are terrified of the answer.  If you don’t ask, it won’t happen, won’t be real. 

I was given no explanation of what was happening and I began to feel that I was being avoided, that staff were afraid to come into my room, were avoiding something. As the hours ticked by, the panic began to rise within me. 

Finally my husband returned with a smartly-dressed consultant. They both sat in chairs next to my bed while he delivered his pre-diagnosis. 

“I’ve looked at your baby and I think she has Down’s Syndrome.”

Natty

No-one will ever fondly remember the delivery of unexpected news like this, but it felt too formal and too distant. Too much, too soon and overwhelmingly tragic.  Talk of leaflets, a blasted poem about Holland and meeting a nurse with a daughter with Down’s all seemed to come at once with the adage that ‘some of them even go to school.’   Our midwife cried with us.

I wanted to scream at him, make him and what he was saying vanish, go home and start again, make a new baby. My life was over. We would never leave the house again, never go on holiday, Mia’s life would be ruined. On and on my brain tumbled…

But I could not speak, only shake uncontrollably.  He asked me if I had suspected.  My head nodded by itself. Had I? So my core being had known all along.  And all of this was done while ‘she’ lay in a distant incubator in SCUBU on another ward.

I now understand the angst of those around me too, for medical professionals are also only human.  My husband said he saw him shaking in the corridor. But looking back, a gentle word from a familiar friendly face might have taken the sting out of the thunderbolt. Would I have felt differently had we been told by our midwife after congratulations, while our baby was present.

She was our beautiful but vulnerable daughter first, with her fabulous, exciting life ahead of her.  But telling us she had Down’s syndrome amid tears and ‘sorries’ while she was out of sight and reach, meant that she became Downs’ syndrome Personified.  My ignorance made her a frightening sum of all my ignorant stereotypes based on outdated glimpses into the lives of strangers with the condition, and the negative language and assumptions used by many in the medical profession compounded that.

You must have come across an array of professionals at this point, I'm sure some stood out more than others.

Key medical ‘angels' then came to the fore.  The people whose faces and voices remain, whose influences are still felt in our hearts, yet whose names are long forgotten.  Those who made us decide that our lives were far from over and that we would make certain both girls reached their full potential.

The gently persuasive Sister who encouraged us to gradually look at, then touch and finally hold Natty.

The kind nurse with a daughter with Down’s syndrome willing to share a family photo album with us that soon made me realise that we would not only leave the house, but carry on going to all the places we went before.

The Junior Doctor who announced that he just knew we would be ambassadors for children like Natty one day. I remember looking at him quizzically through grieving eyes.

The Midwife who wisely told me that my baby need my love whether she lived or died, and shook me out of my self-pity.

The GP, whose grandson has Down’s syndrome. A no-nonsense man who welcomed her into his arms and coined her nickname Natty.

Knowing Health Visitor no.2 (Insensitive no.1 was quickly bypassed) who had a child with a disability herself, who just ‘got it’.

The calm breastfeeding specialist who guided us through 3 tube-fed, milk-expressing months until Natty finally succeeded for herself.

  

How is life now?
Natty won our hearts, grew stronger, survived heart surgery and flourished, as her proud father always predicted.

Her doting sister developed into a sensitive, caring, intuitive young lady, due to, not in spite of, her sibling's disability.  I became an expert in every conceivable way of helping her reach her potential, spending hours reading and learning about the realities of Down’s syndrome, yet sifting through mostly outdated data.

Tell us about your blog. 

When Natty started school 2 years ago, I began writing my blog Down Side Up I wanted to offer support and encouragement to professionals and parents alike, for I know many of my initial fears were based in ignorance. I wanted to cut through the ancient narrative that is still being pedalled about Trisomy 21.

I wanted to remove the fear and shock so that new parents wouldn’t waste the precious early days coming to terms with Down’s syndrome, rather than seeing their babies as simply that first and foremost. I can’t turn the clock back and make those early days as perfect as I wish they could have been, simply love that vulnerable baby who lay in the incubator for who she was, unaware of the stigma attached to her extra chromosome, but I can make up for it in other ways.

Sisters are doing it for themselves

The blog quickly became popular, filling a needed gap I guess for there was nothing like it at the time. Natty began modelling, an ambassador for children with disabilities in her own right, around the same time and that led to an ad inclusion campaign and media interviews.

Since then I have followed the blog’s path, it has been an organic process and it takes twists and turns I am never expecting. I’m always stunned that those who have nothing to do with disability also love to follow it, for they see that we all are more alike than unalike, that we can all relate to each other. 

What do you think the future holds?

My days when the girls are at school have become structured, unpaid work. Dividing my time between writing guest posts and articles for charities, medical journals and magazines, doing interviews on TV and radio, giving talks to teachers and medical professionals or at blogging conferences and writing to many parents, answering their questions in a friendly familiar way. I’ve learnt to overcome my fear of public speaking and have been invited to give evidence in Parliament on the current disability abortion law. And this is more or less the underlying focus of the blog now. To change society’s perceptions of Down’s syndrome, to remove the fear, to change the assumption it holds that babies with an extra chromosome must be screened out at all costs, to show them that inclusion is a two-way street and that the value of our children, what they bring to society cannot be measured in pound coins.

To Natty I say, ‘You have overcome obstacles that few can comprehend.  You fought for your life in those first few weeks and learnt to breast-feed against all odds.  You survived heart surgery.  You have learnt to walk and talk and smile and sing and paint and cook and swim and enjoy food and ride horses and make friends.  Most of all you have changed opinions and melted stereotypes wherever you go.’

You are our greatest teacher. Thank you for being, for slipping through those increasingly tiny holes in the sonographer’s giant net.

   Hayley, thank you so much for sharing your story with us and I wish you, Natty and all the family a wonderful, healthy and happy life.

Read Hayley's blog  

Down Side Up
 

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