Eating, Walking and Talking

The majority of children with full Edwards syndrome are fed via a nasogastric (nose) or gastrostomy (tummy) tube. For some this is because they have an unsafe swallow. For others their heart conditions have meant that they didn’t have enough energy to self feed. For others there just doesn&rsq...

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Beyond Rocker Bottom Feet and Extra Digits

Recently there have been a lot of new people joining the Trisomy 13/18 Facebook group that I am a member of (Trisomy 18&13 Families UK). Many of them have just learnt that they are carrying a child with Edwards or Patau syndrome and are in an anguished and shocked state about what to do. They ha...

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The Second Year and Beyond

During Cali's second year I stopped thinking about her death all the time and started to try and come to terms with her life. Silly as it sounds I only now started really understanding that I had a daughter with profound disabilities and that they would affect her and us in all kinds of ways. All Ca...

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The First Year

When I look back on the early days with Cali, I think how brave, bemused and innocent we both were; brand new parents with a baby who had a variety of complex medical conditions we knew nothing about, sent home from hospital for “family time” by a consultant that thought resuscitation wa...

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NEW BLOG! Living with Cali by Jay

We are incredibly excited to announce the first part of our new monthly blog by trisomy mom 'Jay'. Jay has captured in words what it has been like for her and her family living through a diagnsis of Trisomy 18 and beyond. Pregnancy, Birth and diagnosis With hindsight it's easy to say I always knew...

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