Parent's corner

Understandably, all of us who are parents put our children's well-being first. When we find ourselves in conditions such as spinal and spinal bifida injuries that we have to deal with on a daily basis, there is nothing we will do or inform ourselves in which way to make it easier for our loved ones and prepare them for independent living.

A common thing with spinal and spinal bifida injuries is that it's currently moving us into a new life situation that was completely different by then. The first thing we need to actively work on is to prepare and empower ourselves to be prepared for the daily challenges. The child can feel his parents' emotions and therefore we can help him a lot more if we radiate the security that is the primary psychological need of every child.

When we first hear such a devastating news, it is completely natural to feel disbelief, and then to feel lost and unprepared. It is also normal to continue with an everyday living and caregiving and at the same time to question why this happened, how long it will last, what will our child's development be like. It is possible that without appropriate, truthful and reliable information, fear and despair will paralyze us and compromise our quality of living.

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Thanks to new medical developments and technological advancements, something that was inconceivable hundred years ago is possible today – kids with spinal cord injuries with an average lifespan. Not only do various aids and techniques developed in the field of rehabilitation and care influence life expectancy in a positive way, but they also have a significant impact on the quality of living.

Also, modern societies we live in are changing and a growing (although still not sufficient) tendency to adapt infrastructure to people who use wheelchairs so that they can enjoy the freedom of mobility is the best proof of these positive changes. People’s awareness about problems handicapped people face on daily basis is growing. Thanks to that, many of those kids are successfully integrated into society and are well accepted by their peers.

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It is also normal that apart from all the above, we are concerned with the future of our kids and the way the spinal cord injury or spina bifida will influence their development throughout their lives – from puberty to possible parenthood. In the preschool stage, it is advisable to focus on supporting their independence, gradually encouraging them to learn to do necessary procedures (e.g. self-catheterization) on their own since it is possible that they will be a lifelong necessity.

It is also advisable to teach them, as much as possible and based on other factors determining their independent living (e.g. mobility of their arms), to do as many things as possible by themselves and to encourage them to learn new things and push their limits. This is a way of building self-confidence and trust where their abilities are concerned. And all of that will make a process of their integration into society easier and give them a chance to experience the fullness of life.

We are surrounded by people successfully coping with various spinal cord injuries and their lives are a proof that they are capable of living a normal and quite often utterly independent life. When we witness such stories, we should remind ourselves that those people were once kids and that an appropriate adjusted upbringing and care were of the utmost importance for their success.

Is my child ever going to walk? is a question we will probably ask ourselves many times, especially in the beginning. There isn’t a simple answer to it since injuries and medical conditions vary. However, it is important to keep in mind that two people with the same diagnosis do not have to go through the same process of development and rehabilitation. It is crucial to have faith and to believe that any condition can be improved, but at the same time we should also stay realistic and should not expect the impossible. On the contrary, we should look for solutions that will ease the problem and improve the quality of living.

A question whether our child will have to use catheters and other medical aids for the rest of his/her life should be approached in the same manner. After suffering such an injury, catheterization can sometimes be temporary.

However, catheterization depends on a number of factors and we strongly advise not to experiment without a guidance of a health professional because there is always a risk of urinary infections that can seriously compromise your child’s life.

How can we help ourselves?

Some of us are worried about prospects of our child becoming a parent. There are many options for parenting and in the time to come, thanks to an extensive ongoing research in that field, even more things will be possible. We are certain that already in the near future more options will be there for our children.

  • by searching for information/finding out as much as possible about the condition our child suffers from
  • by joining and becoming an active member of organizations providing support (e.g. specialized associations and support groups)
  • by fighting despondency and resisting the urge to give
  • by constantly researching and learning about new findings – discussing options of rehabilitation programmes, available surgical procedures for treating the condition and medical aids for improving the quality of everyday living with your medical doctor.
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