Here's our story...
Mya (my eldest) was born @ 37 weeks and what a tiny perfect little bundle she was...everything was fine and we came home!
It soon became apparent that one of her legs was shorter and skinnier...as well as her forehead on one side being enlarged!
After a few trips to the dr she got referred to Ealing hospital. Her paediatrician at first thought she had Hemihypertrophy...we were then sent to King college hospital for numerous tests...
We went through months of being told her lymph nodes were enlarged and she may have a possible lump on her ovary...so you think the worst...CANCER!!!
At the same time we were having genetic testing done.....
A trip to Great Ormond Street to have another scan but thankfully the results on her ovary came back clear!
We had to go for blood tests and scans @ Kings every month but all results kept coming back inconclusive and this on top of expecting our 2nd baby was highly stressful!
I had a chat with the genetic specialist and she had a feeling they were over looking the problem and it may be possible she didn't even have Hemihypertrophy but something completely different!
In the meantime Mya had an eye test @ the hospital and we found one of her optic nerves is larger...the optitian panicked a little and asked her senior if she should be worried...(again thinking she had Hemihypertrophy...and overgrowth condition)...their reply was everyone is different is doest mean something is wrong...this was the first time in a long while I felt a little weight lift off my shoulders! She then had her first pair of glasses ordered!
Then baby #2 was born...a lovely little bundle even though he was 6 weeks early born with phnumonia...so another ting on top to deal with! 10 days later he had the all clear..but developed severe reflux!! Which we had treatment for!!
Finally we had an appointment and a result from the genetic team....
They told me she in fact has a condition called SILVER RUSSELL SYNDROME...which is the opposite of what they thought! Instead of an overgrowth problem...the larger side is her normal side and the smaller part of her is to do with the syndrome!
We have been told this was never have any effect on her and to cancel all other appointments...It was an amazing day!!! They actually found Mya very interesting because she doesn't have all the traits of Silver Russell...her forehead only has an enlargement on one side and her leg with time may even out! We could finally enjoy our little girl without worrying!! I have been told by her paediatrician that we no longer need to see him either but because of her forehead she may need a brain scan when she's about 5...I'm not even worrying about it...it has cause no problems..well except whenever she falls over she always seems to hit that side!!!
My only stress was then to deal with a refluxing baby...
I can completely empathise with all parents hearing bad news but there is always a brighter side and you can often come though it...I feel I did...but stronger!!
The picture is a recent picture of Mya but you'd never know she had any condition what so ever!!! She's the best little madam you could ever wish for...she still has her glasses bless her because she's extremely long sighted and won't ever change! Somehow they suit her and she wears then all the time!
