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Conor was born in January 2021 and we could not have been happier to have him in our lives completing our family of four.  On 30^th March at 10 weeks old we were given the devastating news that he had critical congenital heart disease – our entire world fell apart. He underwent open-heart surgery at Great Ormond Street Hospital on 1^st April but after 9 difficult weeks in hospital it became clear that there was no good surgical options for him and so on 1^st June we brought him home to be reunited with his big sister Ciara and we were a family of four under one roof again. We vowed to make his short life with us as happy and full of love as possible. We were lucky to have a wonderful 4+ months at home with him where we got to know his wonderful character and made memories to last forever. There were many many walks, baby sensory classes, swims in the Olympic pool, aeroplane rides, photo sessions, trips to Winchester, trips to the zoo, picnics with friends, swims in the Atlantic and lots of love from family and friends. He loved books, pulling Ciara’s hair, having songs sung to him, playing his tambourine, splashing in the bath with Ciara, messier than messy messy play and was without doubt addicted to the iPAD! His beautiful smile and infectious laugh will warm our hearts and memories forever. Conor was the most amazing little boy and we could not be prouder of what he achieved in his short life – he taught us what real strength and bravery looked like. He fought right till the end, but eventually his poor little heart could beat no longer and he died in our arms. We are beyond devastated and hope we can find some of the strength that he has shown, to navigate a future without him.

Caring for a palliative baby is exhausting and intense, physically, mentally and emotionally. From 24hr milk feeds via a pump requiring ongoing set-up and monitoring, frequent administration of medications, endless medical appointments and admin tasks, the days are never ending. This has to be done in tandem with the regular baby development activities all while trying to make happy memories to cherish with the backdrop of anticipatory grief. This is where children’s hospices play a vital role enabling families to consider a palliative journey at home by providing respite breaks and support services that make this achievable. We were lucky enough to use Richard House Childrens Hospice twice for much needed respite; safe in the knowledge Conor was being cared for by a wonderful team of nurses. Richard House services are provided completely free of charge and over 70% of their funding is through charitable donations. We would be immensely grateful for any contribution however small to this worthy cause in memory of our darling baby boy.

We are also forever grateful for the care and support from the Great Ormond Street cardiology, palliative care and support teams, the Newham children’s community nursing team, and the Homerton Paediatrics unit. In time we will look for ways to support these amazing services.

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Lots of love,

Helen, Paul & Ciara