Cardiac tamponade secondary to long line migration

Nicolajane

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

Nicolajane

I'm so desperate to talk to someone please , we are trying to sue hospital over this we are 6 years in to suing and getting no where for us as parents it's an open and shut case , they killed my daughter due to tube migrating into her heart feeding her unnoticed for best part of 12 hrs still didn't no why she wasn't breathing properly bp dropping sats not right everything showing signs of distress after she was so well medical negligence is so hard to push for , that night in question we had the consultant crying saying how sorry he was he should have noticed sooner what was going on but as it's a rare complication he didn't realise , it's like flogging a dead horse first solicitor waste of time sent a copy of her note for a report which came back very negative and not in our favour dr saying the care afforded to my daughter didn't fall below substandard case dropped legal aid removed , second solicitor sent copy of my daughters notes for a report we are waiting on a reply and praying this report will be in our favour if not case dropped again and I will move on to another solicitor I'm not giving up they destroyed my beautiful daughters life and our familes it's not fair what we have gone through in nearly 7 years and will go through I till the day I die , I'm fighting for justice for my daughter I won't give up I will take this public to papers and tv if I have to I read on the mda site about care when a patient has a long line in situ they clearly didn't follow the safety guidelines when my daughter suffered her collapse from it migrating yes it's rare but it happens in new borns and adults to we wasn't told of any complications that can happen didn't sign for this yet we had to sign for an X-ray that clearly don't kill anyone if mistakes are made this is so wrong every parent should be told of complications as these are life threatening they do kill not make u unwell but take life's I still see the way my baby was when I walked in the room when they was working on her and it's not nice to see yr babies lifeless body blue it's the worse thing in the world I really hope someone can help me just someone to talk to would be nice please thankyou x

Nicolajane

Thankyou for yr help but I'm not suicdel just looking for someone in same postion as me x

ScopeHelpline

Hi Nicola,

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.