Congenital limb deficiencies

Have you just had your baby scan and been told that you will be having a child with a limb difference? 

Have you just become parents to a child with a limb difference, that was not picked up during your routine scans and it is only now, after your child’s birth, that you have learnt that your baby has a limb difference?

We know that the news that your child has a limb difference can be overwhelming. There is going to be lots of information given to you and you may find yourself getting very upset and angry. You will also have many questions but it is important that you give yourself time to adjust to this news. It can be confusing to try and answer all the questions you have at once.  Many parents say that they feel that they have to grieve for the baby they thought they were going to have. Don’t feel guilty about the feelings that you are having, they are natural and with lots of support and time things will start to become clearer.

Remember that your child’s limb difference is only a small part of who they are and there will be many things that they will achieve as they grow. At the moment your baby just needs to be kept safe, warm and fed whilst you come to terms with this new chain of events. Try to take each day at a time and not worry about the future too much at this point. You are not on your own and there are many professionals, organisations and perhaps most importantly families who have been exactly where you are who are all willing to help.

How and when to tell people: This is a pivotal moment in your journey as a parent of a child with a limb difference. There is no right or wrong way, it is purely down to your preference. Some parents will choose to tell everyone almost immediately after a scan or the baby’s birth, others will wait until they have more information or have come to terms with their child’s limb difference themselves first. You are the best person to decide when and whom you share your news with.

It can be difficult to discuss limb difference with some people:Try to remember that your friends and family are trying to process your new information and probably want to support you. They may get it wrong sometimes, reactions can vary and are sometimes surprising. It can be very tiring sharing the same information time and time again, but you are the best person to share your news as you have more information about your baby than anyone else. Remember that you make the choice here and you can take as much time as you need, giving yourself and your family time to adapt. 

Enjoy your baby: Try and enjoy your baby and don’t let their limb difference eclipse all the wonderful things about having a new baby. Spend time bonding and enjoying your precious new family addition. You will have all the same challenges and experiences as other parents, including sleep deprivation, so remember to look after yourself, including eating and trying to sleep well during this emotional time. Many families don’t have a problem with their child’s limb difference but for others it can be a mixture of emotions including shock, shame and anger, particularly for those who feel that they were let down when a scan didn’t reveal the limb difference.

As a new parent to a child with a limb difference you may find yourself meeting lots of professionals and being introduced to lots of new words. It is a good time to start writing things down in a notebook, including questions you would like to ask at your next appointment.

A child born with a limb difference will learn to adapt to achieve lots of goals and aims. There may be times that your child will feel sad or angry that they are missing a limb or part of a limb and as they grow older you may need to make decisions with them or for them. It is important to be as open and honest with your child and encourage them to speak with you freely about their concerns as they grow. 

The way in which each family copes and adapts can be very different. Sometimes each member of the family copes in a slightly different way, it is a very personal journey. The first few hours, days and sometimes weeks can be very painful but for most the sadness and concerns are replaced with the excitement of everything your baby will achieve.

Support: STEPS, Reach and LimbPower will be able to help you contact other parents and families who will be able to understand and help you at this difficult time. Talking to other families can be very comforting and is a good way to cope with any anxiety and concerns you may have. 

If you feel that you, or a member of your family is not coping well then consult your GP.