Antenatal Screening

Living with a child with a long term condition

Parents who had a baby with disabilities or a long term condition talked about what their life was like. Although it could be difficult, worrying and sometimes depressing, many said that their baby had brought them joy, and that their priorities had changed. 

Several people also said other children in the family had learnt important lessons about tolerance and understanding. At the same time, there were also many comments about having less time to spend with other children and some feeling they may be 'missing out'.

One mother described the shock for the family when her daughter was born with hydrocephalus (fluid on the brain). There had been times when she wished it had not happened, but now she would not want it any other way.

She particularly wanted other parents to know that they were not alone in having negative thoughts from time to time.

Sometimes she found it easier to share negative feelings with people who were less emotionally involved than her family.

The nature and severity of the condition obviously affects the family's experiences. For example, having a baby with congenital heart problems is likely to mean heart surgery and several stays in hospital, and it may feel as if normal life is on hold during this period. Parents may feel helpless seeing their child in distress and very anxious about what the outcome will be. 

One mother described how difficult it was to hand over her baby for heart surgery, but once his heart problem had been corrected they could look to the future again.

Another couple described how a support group helped them while in hospital. The ward became like a new community, where parents from all walks of life were brought together through shared experience.

They described being telephoned with a date for their daughter's heart operation just as they were about to go out for the evening. They emphasised how important it is for parents to find time to relax and enjoy themselves.

Other heart problems are less easy to correct with surgery. One mother whose baby had hypoplastic left heart described meeting the oldest surviving child with the condition. This helped her imagine a future for her son and decide how much they should tell him about the seriousness of his condition. She had felt unprepared for how tough the first year of his life would be. 

Other parents had been given a very grim picture of what to expect, and some felt spurred on by this to help their child do better than doctors had predicted. One baby with a heart problem had a brain scan at 9 months which showed he also had brain damage, and he had many other problems. His parents decided they would not accept that he would never walk or talk and felt their positive attitude had helped him develop. 

He was now in a mainstream school. However, it had been so difficult watching her son suffer that she did not think she could go through the same thing with another baby (see also 'Deciding to continue with the pregnancy' and 'Feelings about antenatal screening looking back'). 

Another mother described her determination to help her daughter make progress, and her pride in her achievements, even though she often felt guilty and tearful about pushing her so hard. 

This determination to do everything possible had also motivated a mother who found out her baby had a partially developed brain and hydrocephalus when she was eight months pregnant. Like other mothers, she said the baby had brought her a lot of joy and changed her outlook on life. 

At the same time, she explained how tiring it was to care for her, and how the uncertainty of her daughter's condition meant she could not plan for the future. This had greatly strained relationships with her partner and her other child.

Another couple whose baby was born with Down's syndrome and a heart problem thought that the anxieties they would face were not very different from any other parents' concerns. They felt strongly that other parents should be told about the positive aspects of having a baby with Down's syndrome, and they were optimistic about his future.

Discovering after birth that her baby had Down's syndrome meant one mother had to change her career plans, and her life was inevitably much more affected than her husband's.

Looking after her daughter was physically hard work, and she sometimes worried about the future. She had also decided that she probably would not have any more children, because if she had another baby with Down's syndrome it would have major implications for the rest of the family. (See also 'How it has affected parents views about antenatal screening'). 

At the same time, she felt strongly that for many people having a baby with disabilities was an enriching experience. She had been much helped by the emotional and practical support of other families through the Down's Syndrome Association. 

Support group contacts may bring new parents in contact with adults with Down's syndrome, and this can be hard initially. In the same way as any new parent finds it hard to imagine their baby as an older child or adult, imagining your baby with Down's syndrome as an adult is something people may need to adjust to gradually.

You can find more parents talking about their experiences of having a baby with a long term health condition on the following our sites: 'Screening for sickle cell and beta thalassaemia and other haemoglobin variants' and 'Parents of children with congenital heart disease'.

Last reviewed July 2017.


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