Diagnosis during pregnancy
Many families have been where you are now. It can feel overwhelming to receive a diagnosis during pregnancy, but support, treatment options and experienced professionals are available. You do not have to manage this on your own.
Steps Charity is also here to offer support and advice to make this journey as manageable as possible. Steps is the leading charity working for all those whose lives are affected by childhood lower limb conditions. Everything we do is about valuing and supporting individuals, families and carers affected by conditions which have an impact on the legs, hips or feet.
We offer advice and support and can link you with families who have had a similar journey to you.
Reactions
Following a diagnosis or potential cause for concern, it’s normal to feel shock, sadness and even anger. It’s important to take time to think, to absorb the news, and to accept your new circumstances. Initial concerns may diminish as you start to learn more about your child’s condition. If these feelings become overwhelming, speak with your midwife, GP or hospital team for additional support.
Your medical team are an essential first point of contact and will be on hand to answer your
questions and help you understand where you go from here.
Talking to others who have been through the same experience can help address any fear or practical issues you have, and Steps can help to connect you with other parents through our family contact service and closed Facebook page.
Once your baby has arrived, any worries about the reactions of friends and family will fade as the day-to-day practicality of having a newborn takes over.
In time, families find that while their child’s condition may bring challenges, it is a small part of the much bigger journey that you are starting as a family. Children with lower limb conditions regularly go on to lead active, fulfilling and happy lives. Their condition will only be a small part of who they are and who they will grow up to be.
Sharing the News
When and how you tell close family, friends and other relatives about a diagnosis or cause for concern during pregnancy is a very personal decision. You may want to tell people straight away or you may prefer to wait until your child is born and you know more about the prognosis and potential treatments on offer.
There is no right or wrong way or time to share the news, however, being well informed about the condition and having the opportunity to connect with other parents who can understand what you are feeling will likely help.
Once you do share the news, your relatives and friends will probably want to know how they can support you and your child, so take advantage of the experiences being shared by other parents, to help you feel better equipped to answer such questions and get the support that is right for you.
Time in Hospital
For many parents, learning that their child requires hospital treatment can be an extremely stressful time. “How will my child cope with an operation?”, “What happens with the anaesthetic?”, “Will I be able to stay with them?”. These are very common questions that might be going through your mind. Steps has produced a guide for parents and carers ‘Preparing for your Child’s Surgery’, to answer some of the questions that might come up during this worrying time and to help you prepare your child (and yourself) for admission and surgery.
CBeebies’ Dr Ranj offers simple, useful hints and tips about preparing your child for a hospital visit for procedures or tests. You can find his ‘Get Well Soon’ video series on BBC iPlayer.
Support services
Every hospital and local service is different. Don’t be shy about asking hospital staff any questions you may have – they’ll be happy to help.
Find out what is available where you are. Some hospitals offer support services such as:
Patient Advice and Liaison Service (PALS):
Providing advice and information about the NHS and about health-related matters.
Family Support Service:
This team offers practical guidance, emotional support, and information to help families navigate their child’s care and access the services they may need. They may also be able to help you access additional financial support.
League of Friends:
Their purpose is to improve the care and comfort of patients, visitors and staff.
And you may be able to get help with hospital related expenses so ask your hospital about:
Free or reduced hospital parking:
Some hospitals may let you park for free, or at a reduced rate, if you are visiting your child.
Free hospital meals for parents:
When you are visiting your child in hospital, it’s important to keep your own strength up. Eating away from home is expensive and some hospitals may provide free meals to parents who are visiting their sick children.
Accommodation and Ronald McDonald House:
The Ronald McDonald House Charities help families stay near their sick children while they are in hospital. There are 14 Ronald McDonald Houses across the UK, all located close to specialist children’s hospitals. Families can get some crucial rest, a sense of normality and support from other families, all in a “home from home” environment.
The charity tries to help any family they can, although families who need to travel the furthest to be with their sick child get priority. For more information, phone Ronald McDonald House on 0300 011 1113 or visit the Ronald McDonald House Charities website.
Steps is here to help
We are the UK’s only national charity which supports the most common and much rarer conditions affecting the legs, hips and feet. Steps offer confidential advice and support to parents, carers and adults. Whether you’re looking for condition-specific information, practical guidance, emotional support, or simply for someone to talk to about the challenges you’re facing, we are here to help you.
We offer a wide range of services to help and support all those affected by childhood lower limb conditions. We are continually reviewing and developing resources, including condition guides and informative videos.
If you are affected by or would like to learn more about the conditions we support, please contact Steps via email info@steps-charity.org.uk or leave a voicemail message on 01925 750271 and one of the team will be in touch.
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