Hi Robyn, haven't found any support groups yet as we've been busy with bub being in the scu.
We are being sent up to see a specialist in sydney in January so we are hopeing they will give us information on some support groups or know of people we can contact in similar situations.
Good Luck in January!! And with your prescious girl still in SCU.
If you dont mind me asking, did you know before birth that she was ectrodactyly?
I'm sorry, I have so many questions as we really are at the unknown until out boy arrives. I am new to this (and any) forum, so am unsure if I can send a personal message to ask questions.
We have felt very alone in this since we found out about our boy, even though we have been through genetic councilling, we have yet been put in contact with anyone in a similar situation. I would really appreciate keeping in contact, sharing information and contacts if thats ok?
Thanks by the looks of things she will be home by he end of the weekend
We had no idea until she was born, I had Placenta praevia so they were more conserned about where my placenta was at every ultrasound I had.
I am happy for you to send me a message to ask any questions you have (if I'm able to answer them, or at least help in any way) And to keep in contact, it would be good to know someone in the same situation.
We have known since 19 weeks that our baby had a malformed hand, but it wasnt until about 26 weeks that it was diagnosed as ectrodactyly. We havent been given much information on the condition, only what we have researched online, which isnt much!! But we were referred to The Royal Womens Hospital in Melbourne to the Maternal Fetal Clinic where we saw a specialist ultrasound technitian, then an obstetrician who referred us to there genetics clinic. The following week we saw a genetisist who went through our family history and examined our hands to see if we had any characteristics. With not much to go on in our histories, we were then offered an amneosentesis for a chromosone test to see which chromosones are effected in our baby. The results would only give us the potential effects of ectrodactyly for our baby, so we have decided to wait until he arrives before having genetic test done which will be more in depth that the chromosonal tests. I could not have spent 10 weeks worrying about what 'could' be going on with our boy.
So our boy is due to arrive in 2 weeks, we are then being referred to The Royal Childrens Hospital to see a paediatrician, paediatric surgeon and again the genetisist from The Royal Womens.
Not that this is much help for you, but knowing what specialists we are referred to, you may be able to ask questions in January.
Fingers are crossed that your baby girl gets to leave the SCU over the weekend.
hi there i am from new zealand and i have twin daughters. at my 20week scan they picked up that something wasnt right with my second twin so we were sent to the hospital for further investigation to find out that she had ectrodactyly of the left foot. once she was born we had more test etc to see if there was reason for this and they couldnt find one, we also had serval appt with a specailist to she what her options were. she is now 28mths and had surgery a month ago to correct her big toe so she is able to wear normal shoes, it has been a battle but she is doing really well now. before her op she had to have shoes made for her as she couldnt wear normal ones. it has been very hard as people tend to steer all the time but as time has gone by things have been easier. i know that things are going to be hard as she grows and we will deal with that when the time calls for it. but for now she is a happy 28mth old toodler that does everything that every othe toodler does.
Hi! I was looking for a support forum for children born with Ectrodactyly when I ran across this thread. I am 21 weeks pregnant with a baby that will be born with Ectrodactyly of her hands and of her feet, just like her daddy was. I would love to get to know more parents that have gone through the same things that we will!
Hi, is there anyone in Sydney who can recommend me to a specialist re: Ectrodactyly. My nephew was born last week with both hands affected. No history in family... Any help would be appreciated.. Ed
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