Dexter’s Story by Ali Filer

Written by Guest Writer

April 17, 2022

At my 12 week scan, which I had to attend alone because of Covid restrictions, I was taken into a small side room and told that our baby had fluid around his neck and more tests were needed at another hospital. There and then I was asked if I wished to continue with the pregnancy or book a termination as it was more than likely that our baby would suffer! 

We decided to have further tests, as we were so concerned as to whether or not our little one would survive. The list of life limiting diagnoses were flowing through our head constantly. 

After a few weeks and horrible invasive procedures, we were told over the phone ‘we are so sorry, but your baby boy has Down syndrome’. Again we were asked if we wished to continue with the pregnancy. 

My husband and I work with children with Special Needs and the diagnosis was such a relief to us as we knew that Down syndrome would not mean he would ‘suffer’ and would just take things at his own pace. 

It was identified that our baby had multiple holes in his little heart and would need regular monitoring throughout the pregnancy, however he was doing really well. 

During all the 15 appointments we had, we were asked if we still wished to continue with the pregnancy! Every single time! 

I went into natural labour at 36 weeks and just as contractions were getting stronger, the midwife took my hand and said ‘please just say if you want this to stop, it’s still not too late’! 

Dexter was born prematurely and needed a little bit of support but eventually, after a seven day stay in the intensive care unit we were able to go home! 

He has been doing really well and is so well loved by everyone he meets especially his 2 older sisters. 

We love watching him grow and develop, and seeing how much love and joy he brings to our family. It just breaks my heart that so many professionals felt they needed to ask if we wanted to end his life right up until we were about to meet him! 

We were aware of what having Down syndrome meant, but what if we hadn’t, like so many others don’t? Being reminded so many times (including during labour) that it is legal to end the baby’s life right up until they enter the birth canal, must be terrifying for some…I guess the 90% termination rate following a Down syndrome diagnosis proves this. 

Yes, he is developmentally delayed, but he is doing everything, just in his own time and in his own special way. 

Yes, he sometimes get poorly and needs to go to hospital, but we are absolutely blown away with the amazing team of medical professionals that support him. 

And yes, he has Down syndrome. This is not a life limiting illness. He loves life and is growing and learning every day! 

Our family is so lucky to have Dexter and all the love and happiness he brings. He’s just turned 1 and we honestly couldn’t imagine life without this cheeky little chap in our lives. 

He is not a condition or a label.

He is not suffering and does not have an illness. 

He is quite simply Dexter, a person in his own right! 

5 Comments

  1. Ann Beaulieu

    You are an inspiration. Education and awareness is never-ending. Keep up the good work. Dexter is amazing 👏

    Reply
    • Erika Petrie

      Thank you very much for your very much appreciated and valued comment Ann. I agree with you that Ali deserves as much praise as Dexter for the work she does in raising awareness and highlighting the importance of an inclusive ‘person first’ approach. Dexter, very much like my Miki clearly lights up the room and is a bundle of joy and can teach us a lot about what it means to live in the moment.

      Reply
      • Ali Filer

        Thank you so much… I’m just learning from Dexter each day and sharing how our life actually is! He’s a blessing to our family and everyone he meets so it’s a joy to be able to raise awareness as we continue on our journey x

        Reply
    • Ali Filer

      Thank you so much Ann. Dexter will continue to show people how it really is… which is pretty amazing!

      Reply
    • Erika Petrie

      A beautiful comment Ann…thank you for your insight!

      Reply

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