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.
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