Here are some suggested organisations that offer expert advice on SN.
Is this clinical negligence(6 Posts)
At 17 months old DS, who is now 26 months, had a status seizure was intubated at our local hospital and flown to a much larger children's hospital a few hours away. He has a genetic mutation associated with developmental delay and intractable epilepsy with status seizures.
Prior to this event he was developing on track but significantly regressed after this episode and is now functioning behind his peers (not walking, talking, feeding himself, communicating etc but can crawl well and cruise).
The care initially in PICU was fantastic but once he was extubated he was quite literally dumped in a general ward. While on this ward he kept becoming unresponsive and having prolonged episodes of increased Respiration and nystagmus. This went on very frequently for well over 10 hours while the nursing staff and junior doctors were not proactive and nurses initally delayed registrar help, when they finally arrived they did not intervene despite our sons main diagnosis. We insisted he should be in a neurology ward but the would not move him as they claimed he was at this hospital due to a viral illness not his neurological condition (NOT correct as our own hospital only had to transfer because they don't have PICU).
Eventually my son started to have convulsive seizures alongside his nystagmus. There was not one nurse on the ward!!! I then had to pull the emergency buzzer despite being on an open ward with the nurses station beside us. They were so unprepared and had NONE of his rescue medication on the ward and then had to walk to the neurology ward to obtain it leaving us completely alone while he violently seized, vomitted and oxygen began to decrease. My partner and I were left alone to suction our son and administer the oxygen without consent as no one was there to help. When they finally arrived back with the medication and saw the situation the put a call out for all available staff to attend. He was transferred back to PICU were the care improved. When he came round it became evident he was blind. He had 6 weeks of cortical blindness caused by this and we as a family believe this lack of care may have contributed to his regression. It has been almost 1 year and while he is in a much better place with his sight back, developmentally he is behind were he was before this event.
The whole thing has been so traumatic and we are only just getting our head around thing. My own father, who is a hard man, would cry after every visit for the following few months. It breaks my heart.
I'm sorry this is so long but I just wondered whether to pursue a complaint.
All I can suggest is that you discuss this with the clinical negligence department at a firm of solicitors, like Irwin Mitchell. (I had a conversation with them myself, in which they gave me their opinion)
I agree, speak to a solicitor that deals with clinical negligence.
I would say it was highly likely from your description of how he was for 10 hours prior to more obvious seizures, that he was having some seizure activity that was not treated. This could easily have caused regression as you describe, as could the main seizure he had and the resuscitation you had to help with.
The problem with the clinical negligence side is there is no evidence apart from your testimony that anything untoward happened in those 10 hours in question. There may have been a viral illness aspect to your sons condition which exacerbated the seizures, or they had diagnosed it as such. If they acted in good faith it may impact in the case. Not having the correct medication and staff to deal with a seizure on a children's ward (general or otherwise) is frankly unbelievably negligent. The most problematic element to any case is your sons genetic condition and how it affects his development. Genetic conditions are the greatest get out of jail card for the defence in cases of clinical negligence and some solicitors are not keen to take such cases on because of it. However negligence is negligence and your case sounds worth taking to a solicitor. If nothing else, it will give you answers and maybe hold people accountable for poor care.
I wonder if anyone on here has experienced clinical negligence by NHS and was faced with false statements in the records. My son now 9 y.o. has been diagnosed at the age of 7 with PVL and a moderate dyskinetic Cerebral Palsy. It took me a long time to get a formal diagnosis and for years since birth, many reports of NHS ophthalmology dep., paediatrics, neurology etc confirmed the issues in my child as hypotonia, nystagmus, vision -3/-2, global developmental delay, reflux as a baby etc. A MRI taken when he was 19 months was apparently normal and it mentioned that the high signal in white matter was normal as it was the so called terminal zones of myelination. As it never sat right with me I pushed for another MRI and eventually had one done in The Netherlands (my birth country) by a renowned child neurologist in one the best hospitals in Amsterdam. This MRI states that signal increase posterior limbs is too much to be terminal zones of myelinisation, so going against the first MRI taken.
The birth was far from normal. I was induced because of gestational diabetes which was controlled by diet only. I came in hospital on Sunday evening and over the evening and all day on Monday a total of 3 prostins were used but still I had problems dilating. On the EFM screen I noted some drops in my ds heart after the 2nd prostin. Then on Monday evening they broke my waters (clear pink water) and I felt strong contractions every 3 mins or so. I asked for an epidural which was provided 30 mins later. I was moved to a delivery room where they put me back on the EFM and a drip. Again I noted the decelerations, some very sharp below 70, in my ds heart. I highlighted this to the midwife and asked her if it's worrying. She just laughed and said it"s fine, try to get some sleep. It is now around 23.00hrs so I did. Next morning I'm woken up by a midwife saying that there are some concerns with the baby and she put a fetal electronic monitor on his scalp. She prepared me for C-section and explained that they may have to do a c-section. She said they are preparing theatre for you right now and are just waiting for the on call consultant to arrive. She provided my husband with the blue hospital dress etc. and then left. We were in shock and did not fully understand what was happening. In theatre at least 5 persons were there and the on call obtetric consultant. I got topped up on the epidural and then after a while my son was delivered by suction cup on the 4th pull. He was then immediately rescucitated for a few minutes. My husband says that his legs were dangling/floppy and that he was pale/gray. He was then brought back to me and we did skin to skin. He did not cry and was quite floppy. He would not breastfeed and seemed to weak. Now he also had one stiff leg. I felt so worried and was looking for reassurance an asked if this was normal but nothing was said. They took me to a room next to theatre and asked me to see if he would latch on. He didn't and seemed very weak. He also had a huge bruise on his head. I was brought to the recovery room and a while later my son was brought to me all dressed up and appeared to be sleeping in his newborn cot. I fell asleep and told my husband to go home to get some rest. We thought all was fine as he was so calm. Later that day my son woke up but wouldn't settle in. He was unable to breastfeed/suck and so I am provided with small C&G bottles. He is crying all night and day and every now and then fell in an unconscious state. I begged the midwifes to check on him and said something isn't right. They gave him paracetamol bit no investigations were done. He continued vomiting his milk. I never felt so lost also as I was on a catheter. Next day the pediatric consultant came round and she looked shocked by his scalp but did not say anything. My husband and I told her of our worries that we feel that something is wrong but she did not further investigate. She listened to his heart and noted a heart murmur. She took some notes but did not seem to care that he was so unsettled. My husband and I felt confused. I asked if I could go home then as I have more support at home then here. They released us and told me to massage my belly as I was on a catheter and I should pass urine. At home our son continued being unsettled and having feeding problems, mainly vomiting. I went to GP and asked what was wrong with my baby. He didn't know, so he said, and he arranged for a health visitor to check on the baby and our well being. My ds also got gaviscon to put in his milk for his reflux. My ds then one night had a tonic clonic seizure and after absences. He also seemed to have problems regulating his body temperature. Sometimes he turned blue ish. My GP said that next time it happens we need to bring him to hospital. I was finally referred to hospital for further investigations when he was 2 months old. Then the problems hypotonia, reflux, nystagmus etc were confirmed. The eeg to pick up on signs of seizures was normal.
I cannot help but feeling that the NHS staff at the time of birth and the midwife in labour were negligent. Also the midwifes in post natal did not give attention to my concerns. It was a horrible experience and it confused us in thinking that he only had scalp pain and issues with breast feeding. Not realising at the time that these are my the signs of a neurological issue.
It took me 7 long years to find answers and yo get a diagnosis of CP for my son. And then I took a solicitor in hand. We requested all clinical and medical records and this is when I really got shocked. The records mention that my son was born pink, warm and alert, slightly oxygen required at birth, fetal distress but not pathological, apgar of 6 at 1 min and 9 at 10 min. The stiff leg was referred to as positional tilapes. It also said good cry heard. The blood acidosis samples taken were perfect but did contain a different's patient's name on it. The ECG print out of EFM reading showed several decellerations almost every hour and towards birth. Post natal records showed notes as unsettled, very irritable day and night, sore head, heart murmur.
My solicitor says that since my ds wasn't admitted to NICU and no diagnosis was made at birth or in the months following, it will be very hard to point causation of clinical negligence on the staff.
I'm so upset by all this. My ds has long life neurological issues as nystagmus, vision problems, gross and fine motor problems and cognitive learning disability, involuntary movements in his muscles and face. I lost my job and am burned out.
I am absolutely 100% convinced that this is a cover up by NHS. That is my opinion.
Please take camera's in with you and also into theatre and record everything. In this way they cannot lie about things as his appearance at birth. Also don't let them confuse you and follow your gut feeling. I made the mistake in believing the staff that my ds would be alright and we were very naive.
I hope we get some justice.
Zsupermum. That's sounds absolutely awful for you. All the delays and what sound to be cover ups. I would strongly suggest you see another solicitor taking all the case notes that the first one has seen. If you can't get legal aid, try a no win, no fee solicitor. A complicated delivery and birth needs a lot of experts to look at all the notes and push for the correct information. However, you are right and a lot of information and records go missing.
Join the discussion
Registering is free, quick, and means you can join in the discussion, watch threads, get discounts, win prizes and lots more.Get started »
Please login first.