Prenatal Diagnosis of Down Syndrome: What I wish I could tell my patients

Please allow me to introduce myself. I am a family doctor (GP) working in the UK. I am also mother to three children aged 8, 6 and 5. My children are full of energy, love and mischief. My youngest daughter also has Down syndrome.

You have just been told that your unborn child has Down syndrome. Somebody used those words, that I once studied in my text books about your unborn child:

Trisomy 21 (an extra copy of the 21st chromosome)

Learning disability

Low muscle tone

Risk of heart problems

The are many good, factual resources, explaining the medical implications of being born with Down syndrome.

My concern is these only tell part of the picture.

Your midwife or doctor can tell you what happened to produce cells with an extra copy of chromosome 21. But they can’t tell you (yet) what colour eyes your child will have, whether they will look more like you or your partner, which football team they will support or who they will have a teenage crush on.

I wonder if while you were still reeling from this news, you were given frightening medical information, an outdated prognosis and perhaps, almost without a pause, termination was mentioned.

Please will you allow me to talk about Down syndrome from a different perspective?

As a doctor and a mother of a daughter with Down syndrome, please may I tell you my alternative list of strong possibilities for a child with an extra copy of chromosome 21:

Happiness and Joy

I see many people face great adversity in their lives. It does not follow that my healthiest patients are my happiest. Or that those with the highest achievement in education, sport or business, lead the most content and fulfilled lives.

However we do have evidence about a group of happy people. In this group 99% of respondents said they were happy with their lives, 97% liked who they are, 96% liked how they look. Who are these happy people?

People with Down syndrome.

Advances in Education

We live in a time of great progress in education for people with Down syndrome. In the UK many children with Down syndrome are educated in main stream school. The ability to detect and correct sight and hearing difficulties are removing barriers to learning and inclusion.

Did you know that many children with Down syndrome can enter school at age 4, already knowing many of their letter (or phonic) sounds? This is because children with Down syndrome are typically strong visual learners.

Did you know that great strides are being made in helping children with the aspects of learning that they find more challenging such as auditory memory and speech pronunciation?

Dreaming and achieving big dreams

I wonder if before this diagnosis you had hopes and dreams for your life and your pregnancy and now you feel that all of those dreams have been shattered.

Please trust me, they aren’t.

People with Down syndrome are living hope-filled lives. There are young adults with Down syndrome who are gymnasts, swimmers, models, actors and actresses, photographers, chefs… I could go on. Did you know that some people with Down syndrome are living independently, holding regular employment, getting married and raising their own children?
Enriching their Community

I hesitate as I say this. I do not believe that the worth of any person, is dependent on what they contribute to society. My personal belief is that all human life is precious and valuable.

However, I wish I had the words to describe to you the look on the faces of my friends, colleagues and patients when they talk about their loved one with Down syndrome. I wish you could sit next to me as they proudly show me the photos on their phone, how their eyes light up as they describe the laughter, the music, the fun and the dancing.

Loving someone with Down syndrome has changed us. We can testify that people with Down syndrome see the world from a different perspective and that those of us with a mere 46 chromosomes are often left wondering whether we are the ones missing out.

I wish that when you typed the words “Down syndrome” into Google that these were the messages you see first. Instead of the adverts for how to detect and (presumably) destroy this life that you carry inside of you.

In a recent survey, parents of a child with Down syndrome were asked what they would tell other prospective parents of a child with Down syndrome, their most common responses fell into these categories:

  • You will experience joy/rewards
  • There will be struggles/challenges
  • You will experience love
  • It is important to identify good support group/resources
  • Children with Down syndrome are more alike than different from typically developing children

However, I would highly recommend you listen to someone living with Down syndrome tell you about their life in her own words. Dr Karen Gaffney, has an honorary doctorate and is a long distance open water swimmer and advocate for people living with Down syndrome.

She says:

“I believe Down syndrome is a life worth saying “Yes” to.”

You can watch her full speech here.

All lives matter | Karen Gaffney | TEDxPortland

Thank you so much for listening.

Dr Jane

 

Quotation and You tube clip used with permission of the Karen Gaffney foundation.

http://www.karengaffneyfoundation.com

Cover Photo used with permission by Oliver Hellowell, fabulous photographer who also has Down syndrome.

http://www.oliverhellowell.com/

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8 thoughts on “Prenatal Diagnosis of Down Syndrome: What I wish I could tell my patients

  1. This post in particular touched me. I’m 46 years old and single, waiting for marriage to start a family. I’ve been frowned upon because I haven’t taken matters in my own hands so to speak, and warned that I am too old to conceive and give birth to a “healthy” child. When I do marry and God blesses my womb to carry a baby, I will rejoice in the life God has trusted me to care for. God Bless You, Jane.

    Liked by 1 person

    1. Thank you Fluffy girl for this heart felt reply. God bless you as you wait. I pray that the season of waiting will end soon. Star has changed my perspective on many things. Many thanks again for commenting I really appreciate it. love Jane xx

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  2. THANK YOU. THANK YOU. This post touched my heart. I am a mommy of a two year old girl named Elektra. She is Mosaic and we love her to pieces. It is nice to know we are never alone on this journey. XO

    Liked by 1 person

    1. Thank you for your kind reply. I am so glad you were encouraged by this post! I have just been into your site. Your daughter is gorgeous. The food in your posts looks delicious too. Love Jane xx

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  3. Thank you so much for this perfect post. So many of have been echoing your thoughts for years, but have lacked the kudos that a medical brain brings to the discussion. To read your thoughts as loving parent and doctor is so very powerful. Thank you. Hayley

    Liked by 1 person

    1. Thank you very much Hayley. I found your website and blog before Star joined our family. It was a source of hope and encouragement to me.
      My daughter has taught me more about Down syndrome than my text books ever did! She has also taught me so much about courage and joy! Love Jane xx

      Like

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