National News Interviews on Testing and Down's Syndrome

Relaxing with our Girls

"Right girls, lets make some popcorn and go and sit on the sofa and cuddle up." 

It was time to watch Pets with the Xtra Factor Strictly Do the Most Talented Things Whilst Coming to Dine with Me or whatever it is that's on on a Saturday evening these days. Daddy Downs Side Up was away, and we had a girlie evening planned.

We'd been in our pyjamas for the last hour and had just taken our lovingly made meringue for the Big Lunch out of the oven ready for the next day. I was washing the last of the dishes and had poured a glass of something cold, crisp and white in readiness for full relax mode.

An ordinary Saturday turned into a media day in minutes

The phone rang. Thinking it was Daddy, Mia answered it with an excited "Hiya!" Silence while someone spoke on the other end of the line. 

Welcome to the World Precious Baby Porter

I came across the wonderful Porter family on Twitter a couple of weeks before their second daughter Kara was born. Kara has Down syndrome and her parents were prepared for this before she arrived in their world. I was immediately struck by the calm excitement, love and pride that already emanated from her parents before her arrival. I thought back to our shaky beginnings with Natty in our lives, a sharp contrast to their experience and I felt nothing but admiration and respect for these wonderful new parents. They had felt and overcome their shock and grief antenatally and were ready to welcome this beautiful daughter with open arms, one of the 6% of babies with Down syndrome who are not terminated or miscarried during pregnancy. 

I waited anxiously for new tweets after the news that labour had begun, I held them in my thoughts, conscious of the flagged heart and digestive problems. I was overjoyed to see the first new pictures of the beautiful and perfect little bundle when she made her debut appearance. Many of you joined in sending your congratulations. Kara is doing brilliantly, feeding and home safe and sound where she is getting to know her older sister Eloise. I am delighted that Craig and Sara have kindly agreed to write and share their story with Downs Side Up readers, despite that early baby haze of exhaustion that we all find ourselves in.

H x

Wow no wires!

"I am currently covered in bits of food, trying to organise my living room despite toys, books and a changing mat. I am tired after broken sleep and cluster feeding a new born baby. This is the typical scene any parent can recognise - those first few weeks always seem to last forever. Kara is sleeping in her moses basket and Eloise my eldest is settling down to bed. We should not be here - it should not be like this.

Kara is a baby with Downs  - one of the 750 children born each year and one of the very few that are not terminated from the result from the Nuchal scan at thirteen weeks. We also had an amniocentesis. 

There is a passage in Wolf Hall from which describes how Cromwell feels when the ceiling crashes in - that is the nearest reaction I can give when you hear the results. I remember the shock, the question - Why? I was 37 but not that old, I did not smoke and was fairly healthy. What did this mean ? How could I have a disabled child ? What about my eldest child ? What about my life? The fetal medicine team were amazing - they explained all my options. I could not think - it was like a cloud of grief. We elected to have scans - and to research this to the nth degree. 

I called people who had children who had T21 , scoured the internet trying to assess what this  meant. I asked advice of friends, relatives, experts. The Downs Syndrome Association hand out huge packs of information at the hospital. I read, examined and weighed up all the options. A couple of things made me think - my Granny just turned round and said " The child will never lack friends" and a very close friend stated it very clearly "Its going to look a bit different and it will learn at a slower pace".  I just felt that this child had a right to life and from the scans it looked like a baby.

Its not been plain sailing - heart defects were detected and so were digestive issues. We were prepared to have child in neonatal with tubes sticking out at all angles. But it was not like that. The birth was quick and normal - (it hurts). Straight away Kara breast fed. She sleeps well and hates to be cold. She cries less than other babies so you have to read her but she is feeding so well. Her heart defects had healed, there was no digestive problems and she is hearing like any normal baby. So as I explained at the beginning we really should not be here and I am going to grab five minutes to have a lovely long bath."

Sara Porter

You might also like What to Say When a Baby is Born with Down's Syndrome

Living Life to the Full

and Cautionary Thoughts on Antenatal Screening

Top tips for speaking live on BBC: toilet roll, rescue remedy and your husband's pants.

Yesterday saw my first live national BBC TV interview on an emotive subject via Skype, as I contributed to a discussion on disability abortion law and screening for Down's Syndrome on Sunday Morning Live hosted by Samira Ahmed.

Nervous doesn't come close. Honoured and proud, determined to make every word count, yet scared of who would be on the panel and the questions they might ask, yes. But more a faint shade of petrified I would say. 

And live. Did I mention it was live? Oh, and did I also mention I have a deep-rooted loathing of Skype (other similary offputting online video conferencing applications are available). I like to see the non-verbal cues going on in a room when I speak to people. Oh, and no-one looks at their perkiest no matter how much slap you apply do they?

So here are my top tips for surviving such a live online interview:

Don't run out of rescue remedy 24 hours before.

Prepare thoroughly even if it means staying awake most of 2 nights.

Don't over-prepare, it won't seem natural.

Get a good night's sleep the night before.

Apply even more blusher than your children do when giving you a make-over on a rainy Sunday afternoon.

Try to tame locks you didn't have time to straighten with some hair oil.

Don't apply too much hair oil or you may look like you need to be appearing on Aggie's Grimey Hoarders or similar.

Cellotape key notes to your laptop screen but not actually OVER the camera hole.

Get all your points in, starting with the most important first. 

Don't try to force all your points in like shoe-horning your swollen summer foot into a 

dainty court shoe one size too small.

Bring earphone cable to ears from behind your head to give a more professional air.

Check the sound levels aren't too high BEFORE inserting earphones and pushing them home.

Don't swear at the headphones while the researcher giggles at your efforts to remove the aforementioned objects and bring hearing levels back to normal by waggling fingers in your ears.
Very unprofessional regardless of how cable is hidden.

Stock up on toilet paper, for extreme nerves do have a very curiously unpleasant effect.

Realise that 2 minutes before you go live is not the time to need to visit the loo again.

Don't listen to friends who tell you to wear your husband's pants on the bottom half just to lighten the mood.

If your extremities begain to go numb and you feel faint, drink water, run round the garden and force down a rich tea finger. 

But not if it's 2 minutes before you go live.

2 minutes before you go live is also the wrong time to 

a) re-write your thoughts 

b) run for the hills 

c) remember to take the phone off the hook, 

switch mobile off, silence the dog with a chew.

When you've actually finished speaking, be aware they will have your face on screen about 8 feet high. The world will be able to see you sigh, slump in your chair and pick your nose. (No, of course I didn't!)

Remember to record the correct programme and not miss the first half off somehow.

Don't shout at your other half if he manages 

not to record the show.

Don't watch yourself back on iPlayer, you will be your harshest critic and spend another night wishing you had done it all differently.

At least I know for next time :)

You can watch the episode here for 6 more days. The abortion debate begins at around 20 minutes into the programme.

The message is breaking through....

It is time to take a breath and assess how far Down's Side Up has come, celebrate the great things achieved and focus on the end goal.  I have been marching forward on a crusade to change the way the world perceives Down's Syndrome for just under two months now.  Two short months...

If you count one just one friend without a child with Down's Syndrome telling me she has now 'got it', then I have succeeded.

If you count just one new Mum with a baby with Down's Syndrome feeling uplifted, inspired and 'kept going', then all the late nights writing and networking have been worth it.

If you count one friend writing and telling me that she will not repeat the testing she had in her first pregnancy in any future pregnancies, then I have removed the fear from people's minds.

If one lady whose baby with Down's Syndrome was stillborn can bring herself to read my musings, I am deeply humbled.

If you consider that a link to my blog is going to be included in a book used in GP update training, than we have succeeded in gaining the attention of the medical profession.

If you count one Mum telling me how the midwife told her to 'go home and think about whether she wanted to keep her baby', just two short years ago, I know we have a long way still to go.

If you count just one of Natty's classmates Mums telling me that she watched the video of Natty reading and thinks she reads better than her child,  I have gained respect and belief of others in our children.

If you count the face of a child with Down's Syndrome being used to model clothes and market luxury holidays, then I have demystified that extra chromosome. 

If you count appearing in a national Newspaper, read by 5 million Britons daily, then I have spread the word that Down's Syndrome is beautiful.

If my postman squeezes me in a bear hug and tells me he is proud of me, I know we are loved as a family. 

If you count a stranger telling me of a friend who gave her baby up for adoption, whilst crying tears of gratitude for the work I am doing, then perhaps I can hope to prevent other women finding themselves in such a desperate place.

Down's Syndrome is beautiful.  Down's Syndrome is not to be feared.   Down's Syndrome is to be embraced and included.  Please help me spread my word dear friends xxx