All babies with Down syndrome in the UK should undergo an echocardiogram (ultrasound scan of the heart) within the first 6 weeks. Sometimes we hear of parents being advised a doctor has listened to the heart and cannot hear any defects but not everything can be detected via this method, so an echocardiogram must always be conducted.
It is estimated approximately 50% of babies with Down syndrome have a heart defect. Of these about 15-20% require surgery, the rest tend to self-resolve. It is not known how this compares to the typical population, since other babies do not have the checks that our babies with Down syndrome routinely do.
We know from personal experience, that discovering your baby or child may require heart surgery can be an exceedingly difficult and worrying time. At DSUK we work hard to provide information and support to parents of children and young people with Down syndrome, and so we created PADS Heart Buddies to provide support to families of our babies and young children.
Does your baby with Down syndrome need heart surgery?
Heart Buddies are parents whose little ones have previously undergone the same/similar procedure, who have kindly volunteered to virtually hold your hand and provide support, offering understanding and practical advice throughout this stressful period – from initial hospital appointments to surgery and through to recovery.
If you would like to have a Heart Buddy or volunteer to become a Heart Buddy, please contact Rozie.