Welcome to the DAD.Info forum: Important Information – open to read:
Our forum aims to provide support and guidance where it can, however we may not always have the answer. The forum is not moderated 24 hours a day, so If you – or someone you know – are being harmed or in immediate danger of being harmed, call the police on 999.
Alternatively, if you are in crisis, please call Samaritans on 116 123.
If you are worried about you or someone you know is at risk of harm, please click here: How we can help
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 🙂
Welcome to the DAD.info forum.
We don’t like to set ‘rules’, but to make sure that you and the other dads are kept safe, we have some requests. When engaging with the forum, please be aware of the following:
- The forum is not moderated 24 hours per day.
- Many of the moderators do so on a voluntary basis. Whilst they may be able to provide some guidance, advice or support, they may not be able to deal with specifics.
- We are not an emergency crisis service so if you or someone else is in immediate danger, please call emergency services.
- If you are concerned about the safety of a child, please click here to find the support you can get for them (link to new page)
- If you are in crisis, please call Samaritans on 116 123. They are open 24 hours a day, 7 days per week.
We hope you find this forum a supportive environment and thank you for joining us.