About

This is me.

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This is my husband Gerard.

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And this is our daughter, Aurelia.

 

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Aurelia is due to arrive on the 19th of August. She’s got a beautiful button nose, she likes to sleep with her hands by her face, is a real wriggler, and we love her more than words can say. Unfortunately Aurelia was recently diagnosed at 20 weeks as having a lethal skeletal dysplasia called thanatophoric dysplasia. This means her limbs are super short, but critically her chest is too tiny to allow her to live long after birth.

We’ve taken the choice to let her live as long as her little body wants to, and wanted somewhere to write about our journey through this bittersweet time in our lives for three reasons;

  1. To keep lots of lovely friends and family giving us amazing support updates as to what is happening.
  2. To give us a place to process some of our thoughts and feelings as to what we’re going through.
  3. To hopefully inform and bring some comfort to other couples going through similar situations. With it being a relatively rare pregnancy complication, and with many couples making the very difficult decision to end the pregnancy on discovery baby has this form of dysplasia, there is often a lack of information online as to what carrying through to term will look like. We’ve found it a great source of strength and information reading other couple’s experiences and we wanted to help other couples in the same way.

You can read through our journey so far clicking through the below links;

So far…

A diagnosis

Next steps

Planning

Decisions

Transfer of care

Final decisions

She’s arrived

Birth and labour

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