When your baby looks different

Learning that your newborn baby has a visible difference can be a shock, whether you have known about it for a long time or not.

Some new parents find the following Changing Faces guide quite helpful:

changingfaces.org.uk/do...

It would be really interesting to hear from any parents who have a child with a visible difference, whether acquired or congenital... We run several parent groups and some of the themes that parents are really keen to share ideas on are:

- what support they received/felt was missing

- how (or if) others talked to their child about their difference

- how decisions about surgery were made

- how to help their children's self-esteem and body image

- preparing for school

- dealing with appearance-related bullying and teasing...

1 Reply

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  • Our son (1) was born with a facial port wine stain and developed a haemagioma on his head at 2 months. The health professionals were great with regards to the port wine stain but getting the haemangioma diagnosed took nearly 2 months - a long time when you're watching a lump grow on the side of your babies head! My advice to anyone with a baby with a disfigurement would be to do as much research as possible before seeing consultants so you can ask specific questions. For example I had read that laser treatment is more effective started young so I asked about this and got a referal to a dermotologist. Unfortunately cost is an issue to the NHS and I think if I hadn't asked I wouldn't have been able to get some treatment arranged for him, due to start in 2 months time.

    In terms of making a decision on whether to treat or not, we agreed that if it was us, we would have wanted our parents to treat us, particualrly because we had read laser treatment may be more effective when patient is young. If we can reduce the chances of his birthmark affecting his self esteem before he is aware of it then that can only be a positive thing in our opinion. However I appreciate others may not share our way of thinking as a number of people have made comments along the lines of "oh no dont get him lasered!!" or "wait till he can decide himself" but we feel we are making an informed decision for him, something you do have to do as a parent all the time!

    Hope this is useful to someone.

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