It is said there is no greater loss than losing your child. It defies the natural order of life. A mother spoke to Dr Child in the wake of her son’s death from complications of Marfan syndrome.


Q: My son has recently died. He had Marfan syndrome and suffered complications that led eventually to his death. I do not know where to turn.


A: Everyone is different and grieves the death of a child in their own way. Grief does not go away but it becomes less sharp and you become aware that the days when you can cope better are increasing in number.

Parents may change after the death of their child, and marriages and partnerships may be shaken by the heavy weight of grief and loss. However, partnerships can become stronger and life can mean something again.  It feels so unnatural to outlive your child and your grief is compounded and complicated by so many different feelings, perhaps the strongest being a sense of injustice.

Where is help available? Professional bereavement support and counselling offers time with someone whose job it is to listen, and who has the training and experience to understand. This can be found near to your home, by going online to bereavement child loss. Local counsellors are listed there, according to your location.

The Child Bereavement Charity offers face-to-face support in their centres across the UK as well as booked telephone support. Their helpline is 0800 028 8840. You can share experiences by going to a group to meet other families whose child has died. If you wish to speak to another family with Marfan syndrome, please contact the Marfan Trust Helpline on 020 7594 1605.

(By Dr Anne Child & Victoria Hilton)


If you feel you need to speak to someone or would like to offer your support to someone, then please email [email protected]


The Marfan Trust is registered in England and Wales under charity number 328070 at Guy Scadding Building, Dovehouse Street, London SW3 6LY. Contact us at [email protected] or by phone on + 44 (0)20 7594 1605
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