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Our baby boy, Gregor, was born on 8 February 2006. He was 4 weeks early and weighed just over 5lbs. As soon as he was born there were visible signs that, when taken altogether, suggested a syndrome of some sort.

We were very lucky that the Paediatrician on duty at the time was familiar with these signs and within a few days Gregor was diagnosed with Patau’s syndrome. This all came as a huge shock to us.

Despite some initial breathing difficulties and a major heart problem which was deemed too risky to operate on, we were able to bring Gregor home after a few weeks. We were supported by the hospital with 24 hour direct access to the children’s ward and a nurse who visited us at home.

We were also given the SOFT UK “Your Baby” booklet which helped us to understand more about Patau’s and Edwards’ syndromes.

Gregor had a further period in hospital with a chest infection before coming home with us again. We tried to keep life as normal as possible and get out and about when we could.

Unfortunately, he became unwell again and on arriving at hospital it became clear that he was not going to pull through. He died in our arms aged just 12 weeks.

He was a unique, gentle little boy and so much more than his syndrome.

I contacted SOFT UK with Gregor’s story and a donation and later that year we attended the SOFT Scotland conference. This has become an annual event for as it allows us to spend time with other families and health professionals who understand and it helps us as a family to keep Gregor’s memory alive

Created: 25/03/2019 09:10

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