Spinal injuries parenting master class

Jackie Bailey from the Spinal Injuries Association (SIA) discusses the new parenting master classes on offer.

Father holding his child

The Spinal Injuries Association (SIA) has been running self-advocacy courses at spinal injury centres around the country for the last three years. Participants have highlighted other areas that they wanted more information on. Subsequently, the SIA developed a series of master classes which now include parenting, housing, making a claim under the Equality Act, funding and managing your care needs, and very shortly, employment. Since the beginning of June 2011, parenting sessions have been delivered at six different spinal injury centres, enabling people with a spinal cord injury (SCI) to find out more about becoming a parent.

Exploring all the options

For many, the thought of having children after SCI can be daunting; not only working out how to actually conceive but how are you going to be able to parent whilst dealing with all of the mobility and personal care issues that go with managing the condition of SCI. The course helps to explore all of the options available to help with conception and any pre-planning that may be required, coping with pregnancy and childbirth and the support, aids and equipment that are available to assist parents with a disability.

Whilst some of the 11 spinal injury centres in the country provide some information and guidance around these issues, not all do, and the amount of time and information given can vary enormously depending on the availability of staff with the necessary experience.

The parenting courses are open to all inpatients at the centres, as well as those living with a SCI in the community, their partners and healthcare professionals, and look at the issues from both a male and female perspective.

Most of the participants so far have been people who have had a SCI for a number of years and who are now considering taking the next step to getting their life back on track with their partner. However, the newly injured patients who have attended the courses have said that they have found the course very useful and feel that they are better prepared now to make the decision when the time is right. Couples attending included: those who have managed to conceive through artificial insemination carried out at home, those who have started the process of in vitro fertilisation (IVF) treatment, right through to a couple who attended with twins due just two weeks after the course.

What hadn't been anticipated was the high level of interest from staff at the specialist centres and personal assistants who work with spinal cord injured clients. Whilst some have a good understanding of fertility and conception issues, they hadn't appreciated the need to reassess the management of personal care and planning for childbirth and beyond. For others, it has helped to develop their knowledge base so that they feel better able to support and encourage patients as they go through their rehabilitation, knowing that becoming a parent is something that may be achievable and not another dream that they may feel they have to give up on.

Peer support

The value of peer support has always been at the epicentre of SIA's services and the parenting classes are no different. At each session, participants have been sharing their experiences of fertility, conception, pregnancy, childbirth and looking after babies and toddlers; those that have already started IVF treatment supporting those who are considering it, those who have had experience with fostering and adoption sharing their experiences of the process.

At the last session, a tetraplegic mum attended with her 21-month-old daughter and her doula for part of the session, which the other course participants found very valuable. (Doulas support women and their families during pregnancy, childbirth and early parenthood see www.doula.co.uk) The reality of seeing someone managing to be a hands-on mum gave a very clear, positive message that disabled or not, your child will not view you any differently. You are their ‘normal’ and how you interact with them, love them and care for them is no different to any other parent.

It is often perceived that the loss of mobility after a spinal cord injury is the biggest issue to deal with, when, in reality, it is very often the easiest part to combat, providing of course that an appropriate wheelchair has been provided. More often than not it is dealing day in and day out with personal care issues that can be the most draining and daunting aspect of life after injury. Paralysis affects control of bowel, bladder and sexual function no matter what level of the spine the injury is sustained, and learning to manage these again can be difficult and time consuming. Factor in the changes that occur during any pregnancy and these issues will only be magnified in intensity.

However, it's important to remember that there are other options available as a temporary measure should it become necessary. For instance, if a spinal cord injured female who manages her bladder by using intermittent catheters finds that she is struggling to transfer on and off the toilet more and more frequently during pregnancy and is having difficulty inserting the catheter around her ever increasing tummy, she can, for the last few months, consider using an indwelling catheter, which will allow her to conserve some energy and get a better night's sleep. It is not a matter of 'failing', merely a matter of managing the situation temporarily.

Skin integrity also has to be well monitored, especially if there's a lack of sensation, and it might be necessary to consider using aids in the latter stages such as sliding boards, shower chairs, even a mobile hoist to ensure that there is no dragging effect as weight is gained and skin is stretched. Couples may also need to consider using such equipment if the male partner is the one with the SCI if his partner usually helps with any part of his personal care.

Mother as expert

The course also looks at what has to be considered pre-pregnancy and preparing for childbirth. Whilst in theory every maternity centre should be able to assist a disabled mother with her delivery, in reality their understanding of any particular condition can seem sadly lacking. Being prepared to inform the staff of what can and can't be felt or moved, what is now considered their 'normal' blood pressure, the possibility of autonomic dysreflexia (a potentially life threatening condition for some with SCI) and any other issues pertinent to the mother (as the 'expert on her') may be necessary and may need to be repeated time and time again. It can be frustrating when professionals refuse to take any notice of what we try to tell them in order to help them look after us and achieve the best outcome for all concerned. Perseverance is a must and it's important to share any information about your condition from an early stage.

It is also important to feel confident in the maternity centre staff so do visit and make enquiries about the support available, but if in any doubt talk to your GP about possible alternative options. Some spinal injury centres work closely with their local maternity centre but this is not the case for all; however, a spinal cord injured mother can ask to be referred to another spinal injury centre if theirs cannot provide this service. By the same token, it is important that the delivery suite is accessible to the father if he's a wheelchair user, and that this is agreed and noted at the maternity centre ready for the event!

The course also looks at equipment, and participants have come up with information on gadgets and ideas that have worked for them or others. Rights and legislation also have a crucial part to play, though the postcode lottery can come into play depending on the local authorities' criteria.

Feedback suggests that the majority of participants are considering having children in the future and want to increase their knowledge, and they feel that the course covers this well. Most have found that learning about the impact on personal care issues is the most beneficial part, closely followed by how to cope once the baby is born. Overall, over 80% of participants have felt that the course has been of help in increasing their understanding of the issues around becoming a parent following a SCI.

The parenting master class will be held at more SCI centres around the country and more spinal cord injured parents will be trained to deliver the classes in the future. For more information, please contact Karen Mikalsen at the Spinal Injuries Association on 0845 678 6633 or email k.mikalsen@spinal.co.uk.

First published DPPI Journal, Issue 75: Spring 2012


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