Downright Perfect: Neive's Story: Part 1




One of the things I love about attending craft fayres is that I get to meet some amazing people. Last year, I met Clare, Mummy to Anya, Isaac and to Neive.

Little Neive, who's one of the happiest babies I've ever met, was born with Down's syndrome. To me she is an inspiration and Clare has kindly agreed to share her story with us.

Neive's Story

by Neive's Mummy, Clare

Neive is my third child and a complete surprise at that! I found out I was pregnant two days after Christmas 2012 and after the initial shock had worn off, the excitement set in and we looked forward to a new addition in our family.

Immediately after our good news had sunk in we had a very sudden and unexpected bereavement in our extended family. It left us all overwhelmed with grief and it was incredibly hard to look forward to the arrival of our new baby when one had tragically be taken too soon. Although I didn't know of the complications which lay ahead in my pregnancy, worries did start to set in. However, other than the usual tiredness, aches and pains, my pregnancy progressed and I was occupied with our two other children, Anya, then 3 and a half years and Isaac who was 18 months old at the time.

I declined the 12 week screening test, as I had with my previous pregnancies. In my blissful ignorance, the thought of Down’s Syndrome never even crossed my mind; I was young, I had two children already, it wouldn't happen to me!

My 20 week scan came around quickly and I remember sitting in the waiting room excitedly waiting and only thinking about whether we were having a boy or a girl!

The Sonographer called us in.

The scan seemed to go on for a long time; much longer than in my previous experiences. We were told our little baby was a girl, but the Sonographer explained that she thought she could see an abnormality with our baby’s heart and that she needed to refer us urgently to St Anne’s Hospital for Fetal Medicine in Southampton. We were then shown into a little room and waited for someone to come and talk to us. I was numb, I couldn’t believe this could be happening, and then the tears came!

An appointment was arranged for the very next day and my mum travelled straight up from Devon to so she could come with us.

After a very long, sleepless night I went to St. Anne’s and was scanned by a specialist. The scan lasted for more than an hour, and we were moved into another little room to wait again.  

They explained our baby had a congenital heart defect called a complete atrioventricular septal defect and would require open heart surgery within the first 6 months of her life, with possibly further surgeries later on. We were also told that due to the type of heart defect she had, there was a high chance of our baby having Down’s syndrome.

Our options were discussed, termination was mentioned briefly, but I made it clear it would not be an option for us. I was offered an amniocentesis to test for genetic abnormalities, and again I said “no”; I had declined the initial testing at 12 weeks and I didn’t want to know now. This baby was very much wanted and loved already, no matter what.

The decision to continue with the pregnancy was made, with a scan every 2 weeks, an induction likely towards the end of pregnancy and with heart surgery expected by 6 months.

That evening we broke the news to the rest of the family that all was not well. They were devastated for us and obviously worried about the baby, but we felt lucky to have their support.

I was induced 3 ½ weeks early due to low fluid and lack of movement. Neive was born on 13th August 2013 and I knew instantly she had Down’s Syndrome, she was taken to NICU within an hour of being born as she needed help to breath; she stayed there for a week. 

I fell in love with Neive the moment I saw her and I knew I would always advocate, protect and support her.

She proved to be a fighter right from the word go and we were discharged home after 2 weeks.

...Neive's Story: Part 2

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