Coping with the news your baby has a disability
Elizabeth Miers, ASBAH area adviser for the North West, talks about the emotional problems associated with pregnancy and disability.
Pregnancy is an emotional time for all parents, and to learn that your baby will have a disability can seem a devastating blow.
When you are told the diagnosis, your world changes in a few moments. Hopes and expectations are altered and you face a bewildering new set of questions and decisions.
In a lot of ways the diagnosis is like a bereavement – you will grieve for the pregnancy, the baby you had expected, and the loss of your “perfect” child.
Parents talk of a sense of shock and bewilderment, and then grief and anger; “why me?”; “what have we done wrong?”. And all this emotion is made harder because of decisions that have to be made.
Once parents have decided to go ahead with the pregnancy, there is so much new information to be taken in and acted on.
So many people know nothing about spina bifida, and even less about hydrocephalus. At this stage, it can be really helpful to talk to an ASBAH adviser, who will try to give as much information as possible and “signpost “other sources of help and support.
It can also be good to talk with someone who is not emotionally involved like a close friend or family member – friends and family are themselves shocked, upset and worried. Grandparents especially find themselves doubly distressed, worrying about both their child AND grandchild.
It often feels that everything about this pregnancy is out of YOUR control, and that contributes to the sense of anger and being overwhelmed by the situation.
It is really important that the parents have the information and support to be fully involved in decisions such as what kind of delivery will be best for both mum and baby, and where and when that should take place.
A sense of confidence and trust can start to be built up with the team of specialists who will be treating the baby. All this is reassuring and starts to rebuild the confidence that has been knocked by the news that the baby will have a disability.
The pregnancy can become a parallel experience – one of grief and yet trying to remain positive. One mum described it to me as building a high wall round the grief.
After the baby is born, friends and family may find it hard to know how to act. Do they send baby congratulations cards or get well soon!
Several parents have described to me an ongoing sense of sadness which will suddenly overwhelm them for no apparent reason.
Heightened emotions, caused by changing hormones during and after the pregnancy may make it hard for mothers to keep “in step” over the months.
Talking to someone is often a big help and many people find a release after sharing even their darkest thoughts and fears.
Pregnant and disabled?
Most disabled mothers will have planned pregnancy very carefully, taking preconceptual advice from several specialists.
It can therefore be doubly upsetting when people make negative comments about your ability to cope with a pregnancy and care for the baby after the birth.
Very often disabled parents may have heard negative comments from their own parents. Hurtful remarks, often said in the heat of the moment, such as “how would I cope with two of you?” can stay with you for the rest of your life and damage your self confidence.
Then there are the self-doubts and health fears to contend with. Many couples hoping for a baby are very fearful of passing on their own disability.
But this concern can be viewed in a more positive light – “I’ve coped and so can my child, especially with all my experience and support.”
After the initial excitement of a positive pregnancy test, the parents-to-be experience huge apprehension in the days leading up to the first scan - then disbelief that all is well after all.
At this stage you need lots of emotional support and information. Find positive role models – disabled parents networks and ASBAH may be able to put you in touch with disabled parents who have experienced the same highs and lows. They will give you reassurance that you CAN cope.
And remember, Disability Equality Duty means all public sector organisations are now required to promote equality for disabled people. Social Services don’t often take a baby away – they have to be supportive!
Try to get a good Care Package geared to your parenting role. Use Disabled Parents Network. Cheshire Disabilities Federation (CDF ) have produced a self assessment toolkit for parents to use when setting up a package.
Disabled Parents Network
www.disabledparentsnetwork.org.uk
Tel : 08702 410 450
Disability, Pregnancy & Parenthood
international (DPPi)
www.dppi.org.uk
Freephone: 0800 018 4730
The Cheshire Disabilities Federation
www.cdf-northwest.org.uk
01606 872760