Hi everyone. It has been a very long time since I last posted here, or anywhere on Mumsnet! Life has been very challenging!
I thought I would let you all know what happened with our little dd. We went to see the specialist in early July. She has a large congenital naevocellular naevus, not a giant as first thought. There is an increased risk of melanoma, however, this increased risk is much smaller than we were previously led to believe, only about 1 in 500 (0.2%) over her lifetime. A huge sigh of relief from everyone who knows her!
The naevus has faded a lot on the back of her head but not on her face and a lot of dark hair has grown over it now, only on the naevus, not on the rest of her head. Fortunately the hair appears to be growing in a normal pattern as often naevus hair is curly when the rest is stright or sticks up at all angles due to the deformation of the hair follicles. It also looks as though her own hair will also be dark so by the time she grows some, most of the naevus will be well hidden and both sides of her head should look roughly the same.
The naevus that can be seen on her face has also grown hair all over it, but as she has the most gorgeous and captivating eyes I have ever seen (no parental bias here ) ), most people don't even notice it for some time after meeting her. The specialist thinks it may recede a bit as she grows so we will not look at doing anything cosmetic (surgery?? laser??) until well after she has turned two.
The naevus on her arm has also grown a lot of hair on it and can be easily removed at any time when she is older. She has started to grow a few satellite naevi on her legs and arms, however, these are very small, very pale and do not have the increased melanoma risk of the original naevi.
We have to visit the specialist every three months until she is 12 months old, and then every six months, probably forever, to keep an eye out for any changes that may warn of melanoma development. So far we have had one very scary change that resulted in a biospy (actually they took the whole thing off) and this is a terrifying thing to have happen to a four month old baby!!! Very, very fortunately it was nothing sinister but we do have this constant dread to look forward to for the rest of her life! Our last visit was last Friday and everything was looking rosy!
Overall, while it is awful that she, and those who love her, will have to go through this, we are grateful as there are many, many worse problems that a baby can be born with. Dd is a very beautiful child (not just the opinion of biased family!) both physically and spiritually. She is the most happy, contented, loving, outgoing, adorable child and it is truly a privelege to be her mother!