Dear future consultant

I know that you’ve just read mummy’s notes and you’ll have seen that I have an extra chromosome, Down syndrome to be exact. You’ll see that she has just been sent to see you as an emergency as the other doctors think I might need to come out soon. I think you feel sorry for my mummy and daddy, but I’m now 38 weeks and my parents are so happy – they can’t wait to meet me! They have known for a long time that I have an extra chromosome and they love me just as much as if I didn’t have a little extra -if you read the notes fully, you’ll see that.
I know you are scanning mummy’s tummy looking at me. Can you see me wave at you? I’m so excited to meet everyone! You can see my poorly heart – Mummy knows I have a hole in it, and it worries her, but she knows that it will be fixed by some amazing doctors at another hospital. I sense you feel anxious, nervous, and now you seem a bit cold. You ask my mummy if she knows about my heart and my extra chromosome. I’m sad you ask her the words you’re about to, because if you really thought about it, I think you’d realise you didn’t need to ask my mummy, you could just let her enjoy the moment, but you don’t.

Future consultant, I hear you ask if my mummy is aware that she can stop my heart from beating, even now at 38 weeks. Just because this is legal, it doesn’t mean you need to say this. Especially when my mummy and daddy have known for so long about me. They love me so much…..and it’s so unkind to me.
Then I hear you ask if when I’m born, if I am struggling to breathe do my parents want you to help me or should they leave me and not give me any medical attention. My family love me and want me so much! I have a name already; you’ve heard my mummy call me by my name. My name is Lily. My family want you to do all you can, like they would for any baby. Just because I have Down syndrome it doesn’t mean I am any less loved or wanted than any other newborn baby. I want skin to skin with my mummy and daddy so I can feel their warmth and love. I want to hear their voices that I’ve listened to every day for the last 38 weeks. Mummy has tears in her eyes and tells you to do everything in your power to help me if I need it. She knows it’s probably part of your job and you feel you have to say these things, but do you really think you need to? This is so hurtful to me and saying these things makes her feel sad when she wants to be feeling excited and enjoying her pregnancy.

I hear you say ok and then make some notes. You sound unemotional, detached, like you don’t care what my mummy was going to say. It should be such an exciting time, but it’s now just been made an upsetting experience.

Mummy usually loves to see me on the screen, but she will remember today’s scan as an upsetting, sad scan.

It was the last time she will see me on the screen as next time I will be in her arms. You’ve taken away that last happy scan by showering it with sadness. I know this was not your aim.

You have learnt many things studying to become a doctor but they need to teach you that Down syndrome is not a life limiting condition – except when you threaten my life – it is not a life to be detached and cold about – my life is going to be amazing and you should be sharing my mummy and daddy’s joy and excitement, not offering to end it.

Future consultant, my family are so happy to be pregnant with me. I was planned and wanted so very much. I’m Mummy and daddy’s first baby so they feel nervous like all first-time parents. I know they would both really like it if you gave them reassurance, positivity, and kindness. Look at me as Lily not as a fetal anomaly, now that I will bring more love and happiness into my mummy and daddy’s lives than you can imagine.

Dear future consultant… I wish you could meet future me to see how determined I am and how much I love my life. How I am so much more than an extra chromosome. When you understand me then you’ll understand the truth!

Yours,
Nicola Sparrow

Full time mummy to Lily, Oscar and Fred