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Hello everyone,My situation is rather complicated and I assume your all thinking the same.
Yes I'm no longer with the mother of my twins yet there is allot more to the story.
I have a boy and a girl both born at 27 weeks gestation,being 13 week early.
Both have differences,my boy has Hydrocephalus which is a build up of fluid on the brain,he had to have a SHUNT opperation which went well but he will need allot of care but wont know untill hes toddler and starts crawling/walking etc...
My daughter Has TRP which is shortened due to me not being able to spell it at the moment as I dont have that infront of me.
She has some facial features and differences that arent a dissability but will still wont to beable to find out info on this and what I can do to help on both issue's.
Many thanks any help is much appreiated
Hi Craig
Welcome to the forum
It sounds like you have your hands full there and I wish I was able to provide all the answers
I have googled TRP and it stands for trichorhinophalangeal syndrome, it took some searching but I have found a UK based support group who it may be worth contacting as they would be able to put you in touch with other parents
In terms of Hydrocephalus I have attached a page that I found - do excuse me if you have already searched
Please let me know if these were useful and keep us informed.
Oh and let us know how are you coping? It must be really tough - use this site to let off some steam!
All the best
SM
Thank you so much supermario,I've got quite allot on Hydrocephalus though you can NEVER have enough information and help on this matter especially when its Your son or yourself thats going through it.
The trp is most helpfull and Im printing it all of as we speak.
All I want is to help them both in ANY way I can and DO all I can as there still very little,though my sons nearly 10lb now and my daughter is nearly 6lb.
regards craig
ps- I hope to find groups/metting I can go to with people were I can get more advise/help etc... from
I hope theres some in my area in hertfordshire,Im willing to travel to meet people who have been through it themselfs 🙂
- Samaritans – call 116 123
- Shout – text the word ‘Shout’ to 85258
