You are not alone....One in every 700-900 babies born worldwide will have Down syndrome. Around 60 new families from around Victoria contact Down Syndrome Victoria every year. We are here to offer support and information to help you...especially in the early days.
Everyone who has had a child with Down syndrome can remember, with clarity, the detail of the moment when they first heard the diagnosis.
Although every parent’s reactions will of course be different, most of us experienced, to some extent, feelings of loss, shock, sadness, disbelief, anger… Almost all new parents experience a sense of grief and this is quite natural – the baby you were expecting is not the baby who arrived and, in some way, you are mourning the loss of the baby you were expecting. Allow yourself time to make the adjustment, all these feelings do gradually subside, and do not feel guilty about the way you are feeling.
Some parents find it more difficult to accept and bond with the baby in the early days, some find themselves becoming very protective and anxious about the baby’s welfare and some experience feelings of inadequacy and embarrassment or guilt because the baby has Down syndrome. Being confronted with a disability sometimes makes people realise how many subconscious expectations they had in regard to their baby, which can also lead to feelings of guilt and shock.
All of these reactions are common and, in the vast majority of cases, they will pass.
Initial reactions are also the result of not knowing what to expect. Most people do not know much, if anything, about Down syndrome until they have a child with the condition. Often, impressions of what it means are based on outdated information. If you are reading this, you have already taken a significant step towards finding out what Down syndrome means for your child – and you will find that your reassurance grows as you find out more.
Parents often describe a rollercoaster of emotions as they adjust to the news. Although most parents do not take too long to focus primarily on their baby, and Down syndrome as a secondary matter, the “outside world” may seem to continue to focus on Down syndrome.
So, one minute your baby is just your adorable baby, and the next some casual remark from hospital staff or a friend or relative sends your emotional world into a downward spiral again. You will find that, as you get to know your baby and move on from your initial reactions, the rollercoaster evens out and your emotions will find balance again. Most parents report moments further down the track when they are once again plunged into mixed emotions, but not in the same dramatic form it takes during the early stages of adjusting.
There is no simple way to deal with these difficult early days but, be reassured; most families do cope well with the adjustment that this new baby brings. One thing which seems to help most families – both mothers and fathers – is being open about their feelings and reactions. Talk to each other and your family, friends, health professionals or whoever you need to, about how you are feeling – voicing your reactions, anxieties or fears usually helps in dealing with these feelings, whilst keeping them inside you tends to allow them to grow.
If you feel that you are not coping, there are a range of professional support services available. Families can obtain these services via their family doctor, hospital social worker or Maternal and Child Health Service. If you are not sure how to go about this, please give us a call and we can assist you.