Living Life to the Full

This article first appeared in the May '12 issue of Learning Disability Practice.

Natty is living life to the full

Living Life To The Full

Hayley Goleniowska was initially devastated to learn her baby had Down's syndrome, but Natty is reaching her full potential and has taught her parents a lot about what the condition really means.

I am the proud Mother of 2 gorgeous, confident, funny and popular girls.  The youngest, Natty, also has Down’s Syndrome.

All I could think when she was born was ‘This isn’t what I signed up for.  This is not what I want.’  But of course, I had no idea what ‘this’ really was.  

As Natty’s 5^th birthday approached, my thoughts turned to the crisp, sun-blessed December days just before her arrival when Mia and I planted 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.  When we shrugged off a 1/297 nuchal fold 'risk' (we now say 'chance' or 'liklihood') 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.

Diagnosis

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

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 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. 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.

Specialist Care 

On arrival at the hospital, our baby was quickly taken from us to SCBU and we were ushered into a side room.  I insisted that my husband stay at the baby’s side while staff worked on her.  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 code ‘DS’ being used. 

But a strange thing happens when you are faced with 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. 

I was given no explanation of what was happening and I began to feel that I was being avoided.  The panic rose. 

Finally my husband returned with a smartly-dressed consultant who delivered his pre-diagnosis of Down’s syndrome.  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 poem about Holland and meeting a nurse with a daughter with Down’s, and the addage that ‘some of them even go to mainstream school.’   

Our community midwife cried with us.

I wanted to scream at him, make him and what he was saying vanish, but I could not speak.  He asked me if I had suspected.  I nodded.  My core being had known all along.  And all of this was done while ‘she’ lay in a distant incubator in SCUBU.

I now understand the angst of those around me too, for medical professionals are also only human.  But looking back, a gentle word of warning from a familiar friendly face might have taken the sting out of the thunderbolt.

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 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.

Medical Support

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.

The Junior Doctor who announced that he just knew we would be ambassadors for children like Natty one day.

The Midwife who wisely told me that my baby need my love whether she lived or died.

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.

The Future

Natty won our hearts, grew stronger, survived heart surgery and flourished, as her father always predicted.  Her doting sister developed into a senitive, caring, intuitive young lady, due to, not in spite of, her sibling's disability.  I began writing my blog, Downs Side Up, to offer support and encouragement to professionals and parents alike, for I know many of my initial fears were based in ignorance. Natty is now an ambassador for Down’s Syndrome in her own right, lighting rooms wherever she goes, smashing stereotypes, and even doing clothes' modelling and making advertising more inclusive.

She lives and loves life to the full and shouts out that Down’s syndrome is beautiful and not to be feared.  It is different, it can be unexpected, but it is never bad news, it is never a 'risk'.