I’m Tina, I’m a mum, this is my journey…

The beginning…..

As with my previous 3 pregnancies, the 12 week scan was a day that seemed to take forever to come around.  All the usual questions ran round in my head: how many babies were in there? Was I further gone than I thought? Unlike the other 3 times I felt scared.  I was older now (31) and for the first time we were having a ‘nuchal screening scan’ which was new for us.

The sonographer seemed to be taking forever. I knew she had to get a measurement of the baby’s neck.  “Does everything look ok ?” I asked. “Yes, looks ok to me” she said.  She reminded us we would have to wait for the results of the blood test which went alongside the scan before we knew for sure…

The phone call…..

The following week, my phone rang; it was our midwife calling.  She had the blood test results from our nuchal screening.  She sounded concerned.   She wanted to speak to us; together.  I could tell in her voice this was not routine.  I was confused, scared and started to cry.

When she came to our house, the midwife spoke gently; she reminded us what she had told me on my booking-in appointment regarding the nuchal screening and what the results meant.  I couldn’t remember ever hearing this before; had I really agreed to have this done? Why did I not realise the importance of everything I had agreed to?

She explained to us again that if the results came back as more than a 1:150 chance of something being wrong this was classed as low risk. If they came back as less than a 1:150 chance it was classed as high risk and we could have more tests.  1:7 was our result.

I cried, shook and stared at the letter she had placed in front of me: 1:7.   I couldn’t take my eyes from the paper; I couldn’t understand what was going on. I took a deep breath, and listened intently to what I was now being told…

The waiting…..

“The choice is yours” we were told by our midwife, “you don’t have to go”.  We had already decided that we were going to have the diagnostic tests and we were going to carry on with the pregnancy.

We couldn’t have the CVS test, so were booked in for an amniocentesis.  After a busy week looking after our 3 children (including our youngest getting the chicken pox!), we went for the amnio and were told we had a 3 day wait for the results, but as it was a bank holiday it would be a little longer!  They felt like the longest few days of my life. I was in some pain and was terrified that I may miscarry.  Everybody told me to ‘keep busy’, ‘not to worry’; easier said than done!  On the Saturday, we took our children out to keep us all ‘busy’.  Whilst we were out with the children, my phone rang…it was our midwife!

She explained it shouldn’t really be her giving us the results, but she knew how much I needed to know and was concerned about how anxious I was waiting for them.  She was SO right and I appreciated it so much.

We rushed around doing what we had to do, the poor kids wondering what on earth was going on!

The result…..

I couldn’t even begin to recall how she told us, what words she used or how we replied. The baby had Trisomy 21: Down’s syndrome.

We understood she couldn’t really answer our specific questions as she wasn’t qualified in this area.

I had no questions, I had no fear, I was not sad, I had no grief, I had no disappointment.

What I had was relief, a reason to look to the future again – an end to the ‘not knowing’.  We were going to love our baby.

I was happy. The waiting was over. 

The reaction…..

Dean and I almost immediately started phoning friends and family, telling them our news.

Some people cried, some people said they just didn’t know what to say, 1 person said ‘sorry’, but everyone said they would help and support us.

Everyone was so positive it was overwhelming. I felt right from the start that I wasn’t just going to sit back and go through the rest of the pregnancy quietly.  I was proud and I wanted people to know about it.

The next week at a stay and play session I attend with my youngest daughter, I was telling the leader about our diagnosis. She put me in touch with a good friend of hers who has a daughter with Down’s syndrome.  I was very excited to meet her and to start my journey, properly learning about what life was really going to be like for us.

She was so open, honest and welcoming. She told me we would have struggles along the way, but it would all be completely worth it when we watched our child grow and develop. Her daughter gave me hope that everything was going to be ok. There was a vast amount of support out there that I never knew existed and I couldn’t wait to be a part of it all.

The labelling…..

As the weeks passed, the positivity continued; everyone was very excited to meet our little girl.

I began to notice when people were chatting to me that they would quite often tell me their experiences of people with Down’s syndrome.  Maybe it made them feel part of it, maybe they thought I’d like to hear lots of stories, maybe I just reminded them of people they knew.

What I began to notice more than the stories was the language that was sometimes being used: phrases like “where do they go to school?” or “what age do they live to?”, “can they live by themselves ”or “I saw a little Down’s baby the other day”.   I began to get more and more frustrated.  Why were they grouping people purely based on a diagnosis?  Why were they assuming that all people with Down’s syndrome would have the same life experiences and expectations? Why would people talk negatively about what life could be like for our little girl?

I decided I was just being pregnant and hormonal and getting upset for no reason. Then I remembered a photo I had seen on my friend’s Facebook page; it was a picture of her little girl sitting at a table playing.  The caption said:

I am Hazel
I have Down syndrome
I am not Down syndrome
I am Hazel

Suddenly the photo made complete and utter perfect sense to me.  I found the photo and stared at it thinking: WOW, that is so powerful, so honest and so true.

I noticed the picture said ‘Lose the Label’ at the bottom.  I found their campaign website and couldn’t believe the amazing images I was seeing: young babies, toddlers, older siblings, parents with children all part of the same campaign, all saying the same exact thing, they were not a label they were a person, an individual.  Regardless of any diagnosis, the person came first.

My baby was not even born yet, but I wanted to be a part of the campaign.  I wanted to do my bit for awareness.  I wanted my unborn baby to ‘lose the label’ before it began defining her life.

I contacted Michelle, the CEO of the ‘Lose the Label’ campaign.  Between us we knew we could create a powerful image and for the first time use pregnancy as part of the campaign.

Down's syndrome

I am very proud of the photo and overwhelmed by how many people have seen it across the world. We have had some fantastic comments which make me so glad I was able to be involved.

Looking to the future….

Right now I have around 10 weeks left until our little bundle of joy is here.

Do I know what medical conditions she may suffer from? No, not completely.

Do I realise it’s going to be hard work? OH YES!

Do I realise this is going to have an impact on our family? Most definitely.

Do I have any regrets with our decision to carry on?? Absolutely not!

We have so much support from our local Down’s syndrome group (Cotswold Down’s Syndrome Group: Friends of Daniella), the Down’s Syndrome Association and of course our family and friends.

I cannot wait to meet our little girl and take the next steps on our journey together…

The Down’s Syndrome Association provides support and advice for new parents.  Please contact us on 0333 1212 300 or email info@downs-syndrome.org.uk

To learn more about the Lose the Label Campaign, go to their Facebook page…

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