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Cardiac tamponade secondary to long line migration

Am I the only person with a child that has survived this so desperate to speak with others and there experiance , my daughter was born at 34 weeks developed pneumococcal septicaemia with in hrs of being born was put on 3 different types of intravenous antibiotics at 6 days old she suffered a cardiac tamponade secondary to long line migration the long line was only in place 17 hrs and fed her 12 out of the 17 hrs into the pericardial space surrounding the heart , she was with out oxygen for just under 6 minutes she's severly brain damaged with a few problems going on , due to this accident in the hospital my daughters brain shrunk leaving no white matter only the grey matter she went on after this accident a few days later to develop cysts on the brain which eventually broke down and went taking with it the healthy brain tissue leaving holes in the brain , in turn the brain grew new brain tissue but it was totally blank nothing there at all I no we are very lucky to still have our little girl she was breathing on her own before this happened but had to go on ventilator after and as far as I'm awear she is the only baby to have survived this complication sadly , it is a rare complication that can happen from a long line , we never in our wildest dreams ever thought that our daughter would he left this serverly damaged and are still struggling nearly 7 years on with health professionals ect no one understands so desperate to speak to someone please , she also has cerebral palsy due to this and suffers seizures , she's nasal gastric tube fed can't do anything for her self totally dependant on us for all of her needs she's on many medications for one thing or another one positive out of all of this she has hydrocephalus that don't need shunting due to her brain shrinking more fluid had to build up to fill the space where her brain should have been any help or advice please and thankyou
Replies
The Scope Helpline is available for free, independent and impartial info and support if you would like. They're available 9am to 5pm weekdays.
Freephone: 0808 800 3333
Email: [email protected]
If you would like to speak to someone tonight then you could always give Samaritans a call.
08457 90 90 90
[email protected]
Hope that helps.
With best wishes,
Scope Community team
Sorry that you haven't been contacted by anyone in a similar situation to yourself. Scope run a parent befriending service called face 2 face, which provides free emotional support for parents of disabled children, from other parents with similar experience http://www.scope.org.uk/support/services/befriending/about-face-2-face. You can talk in person, by phone or email. To find out if there is a group in your area please contact us at the helpline either by calling 0808 800 3333, or send us an email.
We also have regional support workers who can provide information and advice for people with cerebral palsy and their families. They are able to provide details of local services and also advice about more complicated issues. Please contact us at the helpline if you would like a referral.
Best Wishes,
Zoe
Scope helpline information officer.