Contentive Ltd - SOFT UK Fundraising
SOFT UK is a charity devoted to supporting the parents, families and children affected by trisomy 13 and
trisomy 18 (known as Patau and Edwards Syndromes respectively) which has affected our dear colleague Ros Hill.
She has shared her experience below.
Trisomy means that someone has an extra chromosome, and Down Syndrome (trisomy 21) is the most common of these. Because there has been relatively little research into and awareness of Patau and Edwards Syndromes, many won’t have heard of them, and it’s only in recent years that prenatal screening for the conditions has been offered. Unfortunately, as a result of the lack of research and knowledge about the conditions, the prognosis and treatment of children born with either condition is very poor.
Receiving a prenatal diagnosis is absolutely heart breaking, and you’re presented with the choice of terminating the pregnancy of an already much-loved child or continuing the pregnancy knowing that you’ll either miscarry, your child will be stillborn, or that they will die shortly after birth (in a few cases many children do live to see their 10th birthday, and some have even been known to live to their 20s).
Unfortunately the medical community do not offer anywhere near the support they should for parents facing such a diagnosis and uncertain future. We decided to continue with our pregnancy despite the diagnosis of Edwards Syndrome, precisely because we were given the choice, but every step along the way our physicians have made us feel very judged for that decision and at every appointment took the opportunity to remind us that ‘your child is going to die’. Even prospects for post-birth care (I honestly never thought I would make it so far as this) are lacking – doctors are entirely reluctant to offer any form of life-extending treatment to a child with Edwards or Patau because life expectancy is so low, and despite research that shows that interventions at birth can improve outcomes for such children. Rather, you are pushed towards palliative care over active care, because many in the medical community see it as a waste of time to do otherwise.
The whole experience of continuing with your pregnancy in these circumstances is a very lonely one. You have no support from doctors, and friends and family don’t understand what you’re going through. You feel as though you can’t celebrate your pregnancy in the same way as others because every day is tinged with sadness and worry, and while everyone tells you to keep your hopes up, too much hope can be impossible. We haven’t prepared a nursery at home, we haven’t had a baby shower, and we don’t even know whether our girl will get to see outside of the hospital. We don’t even know whether she will be born alive.
SOFT is entirely made up of volunteers – other parents who have lived through what we are living through – and provides support during prenatal diagnosis, termination, continuation of pregnancy, miscarriage and stillbirth, and loss and bereavement, as well as support to those families caring for a baby, child or adult with Patau or Edwards Syndromes.
The work they do is so important to many on what can be a hugely isolating, worrying and devasting journey, so I really appreciated your support in raising funds and awareness.