Adam’s Story

Article Outline

 

A brief description of the problems our grandchild had when he was born?

Adam is my daughter’s first live born child. Both his parents were problematic poly drug users. He was born at 27 weeks and spent the first twenty one weeks of his life on the neonatal unit. As a result he was diagnosed with Chronic Lung Disease and Cerebral Palsy.

How we felt about coping with a premature baby?

To have a premature baby affects the whole family; not just the parents. The impact is tremendous. There is considerable worry and anxiety and the ongoing uncertainty results in a strain on relationships within the whole family network. Adam very soon became the most important person in our world and our whole lives were centred on him.

How having a premature baby impacted on our lives?

Sadly when Adam was only twenty two weeks old our daughter died as a result of her drug misuse. We obtained a residency order and subsequently took over his care. His problems improved on a daily basis due to intense support from many professionals, however caring for a premature infant means having to juggle all aspects of ‘normality’ especially around family relationships and work. As a result of the chronic lung disease even a common cold has the potential to develop in to something serious. The developmental delays meant that it took much longer for things like feeding and sleep patterns to be established.

Did we feel supported by others?

We were given tremendous support by the whole team of professionals involved in Adam’s care but this did not allay our fears about the future, both for Adam and for us, and the whole situation was described by our daughter as “very scary”. Adam will be five years old in August and starts school in September. Getting to this point has been a struggle; there have been lots of ‘ups and downs’ but all worth it. He is starting school a year later than the norm and will be going into reception class not year 1, thankfully! This will give him the opportunity to form relationships with his peers prior to being exposed to the more formal learning environment of year 1. He has been attending a day nursery since being eight months old but still finds it difficult to form new relationships and is extremely shy. Since being discharged from the neonatal unit he has only had two hospital admissions, one at ten months of age as a result of developing pneumonia and the second a recent admission for an adeno- tonsillectomy. From a development point of view he has made remarkable progress and he was recently discharged from child development centre review and only sees his Respiratory Paediatrician occasionally. An accolade to and a heartfelt thank you to all the health care professionals involved in his ongoing care. We know it could have been a very different story! However, the future still remains uncertain both for Adam and us, his grandparents. We are aware there is the potential for problems to transpire as he grows but we will deal with these if or as they occur. The death of our daughter and the responsibility of raising our grandson, we believe, has given us the strength to overcome any problem we may be faced with in the future. Adam has enriched our lives in so many ways.

My experience of being a parent representative;

The care given to Adam on the neonatal unit was second to none but even so there were issues which contributed to making the whole experience of having a premature baby more traumatic. The main focuses of these issues were communication and discharge planning. The planning of Adam’s discharge was extremely difficult for us as a family and issues that we felt should have been considered were not. We felt that our continued support to our daughter and our frequent presence on the neonatal unit had led to unrealistic assumptions. To be given the chance to be a parent representative on the neonatal network has given me a sense of purpose and reasoning to my family’s experience. As a parent representative I am heavily involved in planning and facilitating focus groups to explore the very issues we encountered. I have presented at a neonatal non-qualified workforce conference and ‘talk’ to child branch student forums telling them ‘my story’ emphasising issues around communication, assumptions, judgemental thinking and effective discharge planning. Even if being a parent representative for the neonatal network results in improving the experience of having a premature baby for just one family in just one small way it will be a mission accomplished.