Hello, I am new to mumsnet so please bear with me while I learn how it all works. I origionally posted this on health but a very helpful tamum advised that I might be better here. I have a daughter who is 18 months old and has Hydrops Fetalis. Usually the condition is diagnosed during pregnancy and the outlook is not good. I think that there is about a 25% chance of survival. So far all the information I can find talks about pregnancy and what happens at birth and possible causes. When my daughter was born it was a complete shock and took everyone by surprise. She was in special care for about 6 weeks. She had numerous problems but seems to have recovered from most of them, for example hole in the heart, enlarged spleen and kidneys and so much fluid around her body that none of her organs worked properly. I would like to know if anyone has a child with this condition or knows anyone who has as I do not know what to expect in the future (I know that all children are different). I am having trouble finding information on the ongoing effects. My dd has high frequency hearing loss and needs a hearing aid and has problems with mobility. Sorry for ranting but I just thought I'd write a little and take it from there.
Here are some suggested organisations that offer expert advice on special needs.
SN children
Hello benzocat! I have no experience of hydrops but my daughter has numerous problems to which we have no answers. Basically my daughter has a global development delay which means she is 'slow' in all areas of her development. My daughter has mobility issues aswell. How is your dd doing with her mobility? Is she receiving physio advice?
Sorry I am not much help but I and I am sure the other SN mums on mumsnet would love to chat and support you
Hi Benzocat, yes my daughter is walking (she is 4 now) She walked at 23 months albeit a little compromised to begin with. We were reffered for physio and had a few sessions before dd started walking. The exercises the give you to do at home with your little one are good. I noticed on the thread you said your daughter was very bendy, well thats how my daughter used to be - well still is but it has improved alot. My daughter had low muscle tone (hypotonia) and hyper-mobile joints, that basically just move too much. She just needed alot more encouragement off us to get walking, lots of praise and lots of physio. I felt like between the ages of 18months and 2 1/2 yrs I did constant physio!!! The exercises we were given may not suit you but I can tell you if you like.
- was getting her to lie on her back and holding her legs off the floor by a foot and encouraging her to lift her pelvis off the floor
- wheelbarrow races, this will depend on your dd's arm control though, and my dd absolutely hated this.
- Getting her to reach high for things, whther it be when she was sitting or standing.
- Also just encouraging the crawling and walking by holding hands. Also just showing her how to do things and the sequence of doing them. Say with pulling herself up, I would put her hands on the object (peice of furniture) then help her put her one leg up and then help her with her other leg, and gently help her up. It is suppossed to programme the brain to do things apparently!
Swimming is very helpful too I found. I suppose its just perserverance really, lots of encouragement and lots of patience from you (I hope this helps!)
hello benzocat, yes you should be entitled to DLA there is usually a number at the front of your yellow pages to ring. Try to get someone to help you fill them in because they are very difficult to fathom out. The 'carers' allowance (sorry about my typing!) you can claim if you earn less than 70 pound a week, but you do have to be claiming DLA to claim it.
Also forgot to mention to ask your Health Visitor about portage. Portage is a great scheme. You will get a potage worker, who is usually a nursery nurse or play therapist, come to the house once a week for an hour to work on certain things with your daughter. They just play with them really but give you tasks to at home. They also run sort of a toy library which is always a big hit with my children!! There is a website for it here
Portage Website
Thanks for saying I sound positive. My daughter is progressing well, just slowly. She is starting to have quite alot of speech now and attends a special needs nursery - which is wonderful.
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