Sorry the apgar score at 1 min should read <4 - Thank you

Hi
My daughter was born 3 and a half yrs ago. She was born via crash section as FHR deteriorated over a 10 hrs period before the hospital took action. She was just clinging to life when born and was placed on a ventilator for about 4 days. She had siezures for the first night and, as a consequence, was sent for an MRI scan. The scan confirmed damage to the brain caused by hypoxia (cord was round her neck 3 times).
To cut a long story short, we too had no idea what the future held and to this day we still don't know. You can only gauge what is wrong when they start to miss their milestones, until such time just enjoy your baby and worry about it when it becomes a problem.
My daughter still cannot walk, talk, sit, stand etc but I try not to get hung up about how late she is in developing, she is behind but will catch up in her own time with the help and support from all the professionals around her.
Caring for her and trying to lead a normal life is very, very hard and I never though I was the type of person who could cope with a disabled child but here I am 3 years in and still going.
As for the claim, I think you should speak to a solicitor who deals with mediacl negligence asap. If it was a mistake then some heads need to roll to prevent it happening to another. Our claim is being handled by JMW of Manchester.
I know this does not give you the answers you are searching for right now but unfortunately only your child and time can give you those.
Hope everything turns out OK for you all.
Phil

Hello Phil,

Thank you for sharing your story - I do appreciate it very much and congratulate you for the obvious heart ache but determination you have shown. I'm keen to continue to hear all stories surrounding similar circumstance as mine, and hoping a professional will come across my post and be able to understand my technical details and provide an idea how the future maybe - I accept all are differant, no crystal ball, and a gaurded prognosis - as to not lead me down the wrong path, but I'm confident the above must provide a mirror to many previous medical histories with the fact's written above.

Regards and Thank you

Unfortunately its near impossible to predict the outcome of a child with brain injury.

To illustrate

My grandson was born after a placental abruption and was hypoxic at birth, fitted, and was seriously ill. His MRI showed only PATCHY damage to his movement centre (basal ganglia). He is 3 and cant sit unaided, needs a gait trainer to take some steps and only says a few words. He has spastic quad CP. He is on the low side of moderate CP.

My neighbours son had a similar birth but his brain damage was much more extensive and damage to the lobes with the basal ganglia almost wiped out (he was given the last rites) yet at 7 he walks normally, talks normally, runs pretty OK too! He has poor fine motor skills but manages with a computer and is not brilliant at saving himself if he falls, but he looks fab to me!

Always think of the best outcome for your baby and work to those ends, never give up. Thats all I can say.

I showed the midwife this green discharge refered to in the below link when I returned from the toilet, and yet they left me three hours before birth. I remember saying "Isn't this dangerous?" - Crash team "Baby suctioned nasally as copious amoumnts of meconium detected"

http://www.merckmanuals.com/home/childrens_health_issues/problems_in_new...

Regards

Hello renacahill

Thank you for your story, and appreciate the two different circumstances which have provided very differing outcomes. I know this is a contradiction in terms as I accept your views, never the less I still struggle to accept that the professionals are not able to say my baby has CP and at this current time I get "Your baby is doing well" "We will keep a track on your babies progress" " Come back next month for another scan" etc - Drop the gaurded prognosis and tell me with all the evidence and the physical signs what my baby has.

I'm still feel very upset as in my opinion I did not get the reasonable care at birth, and the fundamental mistakes made me share this path with my baby. I LOVE MY BABY so, so, much and that will never change, and I enjoy my baby every day, but the outcome is for life which could have been avoided. I do not want someone else to follow me down this bumby path.

Regards and Thank you

I am taking this weekend to decided passing my medical notes to a medical negligence attorney and would welcome your personal stories as above, and your experiences perusing a claim against the NHS Trust.

I'm fully aware of the heartache, grit and determination I will need, but success or not I need to resolve and draw a line under what went wrong that day, and the possibility my baby will receive the best care money can buy.

Regards and Thank you

I have decided and sent instructions for a medical negligence solicitor to see if there is a case to be heard, and now waiting instructions from the solicitor on what is the next steps?

I also have another appointment with the consultant soon. The access CSF fluid at the last scan had not changed and the current prognosis I am told is to leave it as the baby’s head is still very flexible, growing, thin and can manage the extra CSF fluid. At this stage I have not been recommended/given a MRI scan as this is not required. The information can all be captured by a cranial scan? I am positive, but aware of a treatment process – shunt?

Regards

Attended the paediatrician and at last I am getting the support my baby needs. For weeks I have asked the consultant, the GP, doctors, etc that my baby needs additional help in the way of a support team. I am sure CP is the root cause to all her pain and the characteristics displayed. This visit to the paediatrician has confirmed (at last) stiffness in the back, and other muscle tone areas that need investigating, so my baby is to get access to a physio therapist for rigorous therapy, professional health care visitor, and access to a club for babies/children with disabilities. I am very disappointed that it has taken 5 months to get any recognition/access to a professional support team that can now work with my baby (and to educate me along the way) to start helping improve the quality of my baby's life. Is this delay the norm? The information I have gathered tells me this should have been in place weeks ago. What is your experience?

Next step - attend consultant's appointment

Regards

With the traumatic birth your baby had and the lack of oxygen, no you should not have waited 5 months. The services should have been in place immediately. My grandson had physio visits as soon as he came home from SCBU. Sometimes it seemed too many but it was useful!

Write a list of questions for the consultants appointment as it is easy to get flustered. Don't expect them to tell you what your baby will be like in the future, they will either say wait and see or give grim forecasts which are often not the case!

get this book it is excellent http://www.amazon.co.uk/Teaching-Children-Cerebral-Movement-Disorders/dp...

this book is a lot more expensive but i got an earlier edition on ebay (rare though!). The newer edition looks an even more valuable a resource and has more information. Together they make a very comprehensive set. http://www.amazon.co.uk/Finnies-Handling-Young-Child-Cerebral/dp/0750688...

Hello Renacahill,

Many thanks for your advise I will prepare a list of questions.

Will check out the two mentioned books.

Kind Regards

Finally the consultant has said my baby has CP - and it’s only now that my baby is having all sorts of tests that in my opinion she should have had over 12 weeks ago, to include EEG, blood, urine, and being referred to a neurologist. I asked why has it taken so long, and the consultant replied “We don’t like to use that word”

Has anyone had their baby referred for an EEG and what are they testing looking to find/dismiss – Seizures/Epilepsy?

Now my baby has been diagnosed with CP can anyone help/advise with regards to claiming benefits for her - is she entitled?

Kind Regards

The starting point for looking at benefits is normally to check out DLA:
http://www.direct.gov.uk/en/MoneyTaxAndBenefits/BenefitsTaxCreditsAndOth...

You may also like to call Scope Response to be put in touch with your Scope Regional Response Worker
0808 800 3333

Best Wishes

Forum Moderator

Thank you SCOPE - Moderator

Kind Regards

I should find out today from my solicitors if there is a medical negligence case to be heard. They were passed all the medical notes (I had to pay £10:00 for my maternity/labour notes which took about 3 weeks to obtain) and details. The solicitors have had my notes for seven days now.

I have also today followed SCOPE’s advise and printed the document to complete to see if my baby/I are entitled to DLA.

Kind Regards

Things have changed since my Consultant’s meeting on the 11th Oct. I mentioned to him that my baby’s arm kept twitching (right more than left) and from that I’m assuming he started to schedule the EEG. I phoned him yesterday and now my baby is taking/prescribed some form of anti- epileptic prescription twice in 24hrs, and a CT scan arranged for tomorrow, and the EEG now marked as urgent and being brought forward from the 4 weeks mentioned. I was never right but thought I was making some form of foundation, now this has knocked us both back and worried about the prospects. This trigger of events was not as a result of the test taken on the 11th I am still waiting on these results, it was me basically phoning the consultant to say I am worried. I feel that I am having to manipulate there processes in order for them to take action. I mentioned the thrusting tongue at the meeting and again this was dismissed as normal, as to was the head dropping out of control for a second and then regained strength/appearance (all normal at this stage they say)

My baby is the most important part in this jigsaw without question, but nothing now will change what has been diagnosed it won’t just go away and nor will the team responsible for our care during my pregnancy/birth. The promised email sent to me by the solicitors Tuesday saying that I would have a response Wednesday did not happen. I will not mention the firm as yet but if the service promised by them does not improved 1) Will terminate 2) Will name.

Kind Regards

I really feel for you, this is all so upsetting and a very difficult time. I hope things work out. Elliot had vacant episodes and would go limp from the age of 6 months on and off for about 4-5 months. The only lasted a second or two but 70 or more in a day. To say my daughter and I (Elli is my grandson) were absolutely beside ourselves with terror that they would go on a become full blown fits, is an understatement.

However they did stop and we pray they will never start again. He is now 3. He had 2 EEGs and they both showed nothing abnormal. A friend whos little one has CP said her son also had vacant episodes but outgrew them. Sometimes these babies have cerebral irritation which causes sleep problems and these types of episodes but it is possible they will be outgrown or at least controlled with medication.

Ask your consultant if it is worth giving baby fish oils. We gave them from very early on, whether it helped we don't know but omega 3 is very important for brain development.

Dear Renacahill,

Thank you for the above, and I will speak to the consultant about Fish Oils - I like the sound of that idea.

Kind Regards

Attended the CT scan and have to say did not enjoy my baby having to be put out completely, however accept this was a necessary and important requirement. As the CT scan was Friday I agreed with my consultant that I was not happy to wait over the weekend to understand the results, I would worry all weekend. The consultant agreed and said a neurologist would be there on the day to talk through the results. What actually happened was the radiologist said to the doctor. “Could not see anything major warranting a stay in hospital, and the results have been sent to your consultant, and if he see’s anything he does not like you will get called back in.” Nothing was mentioned about a possible stay in hospital, and the results would be pass to my consultant.

Yesterday I have been told to up the medication as still my baby’s arm is twitching and the initial dose has not made any change. My baby also Saturday night basically did not sleep all night (and I mean all night) The month wait EEG has now been brought forward and takes place Thursday. What with the anticipation of the CT scan results, the medication not working and the EEG to attend, not sleeping or content (crying) I am concerned.

I call it a positive as the solicitors did get in touch - it’s not about sides it’s about having someone professional helping with the steps ahead and getting to understand the route cause.

Regards

Contacted my consultant as I was not happy my baby’s arm, leg and now the eyes turning in slightly and no better since administering the prescribed medication and since upped for three days. The Consultant asked if I thought the baby appeared unwell e.g. sickness, diarrhoea, temperature, etc and I confirmed that apart from the shaking all seemed ok. (still not content or sleeping well) The Consultant said to continue the medication and to keep a look out and if any change/concern G.P or A&E. (should the medication not at least started to work, lets cover myself and say see g.p/A&E, is there not another medicine that may work better?)

The Consultant also confirmed that he was sending Thursday’s CT scan results to Great Ormond St Hospital for a second opinion. I’m told this is the usual procedure for all CT scans. I’m very grateful and support a second opinion especially from Great Ormond St Hospital as they are superb, but is it the norm?

The EEG scan is this Thursday and speaking to the Brain and Spinal Foundation (they are so kind and understanding – would most definitely recommend contacting them if you have a brain/spine concern so helpful) and they have said with all the previous records, the CT scan and the EEG the professional should be in a position to provide me with a foundation to work from – they will know the exact area, they will be able to confirm many angles from a collective professional outcome. I accept I will not get a confirmed guarantee, this is it, black and white - but I will have the information to provide the best area of care specific to my baby’s needs and my acceptance and understanding for the challenges going forward. I have a brave face on at the moment, but I am worried.

My baby has had the EEG carried out and had a total of 23 sensors placed on the head. We were lucky as the test was carried out awake and asleep. Was not provided any feedback to the EEG and told that it will be a few weeks as a few doctors have to look at the reading. "Few Weeks" !! is that correct.

Waiting on the CT Scan results, however as mentioned the consultant has passed onto Great Ormond St Hospital for a second opinion.

Waiting on the numerous blood test results to.

Have today received an email from the NHS regarding a report I requested. They say that it has been passed to the correct department and that I should be hearing soon.

Attended G.P as my baby woke up every 20 mins last night and not settled. Does not have a chest infection but prescribed medicine for a cold.

Kind Regards

Two weeks ago I was told a referral letter was being drafted and sent so that my baby could see a physiotherapist. I had not had any confirmation so I phoned yesterday only to be told that they had yet to send the letter and apologised for the delay. So if I had not phoned when was this letter going to get there – really upsets me.

Have not had the CT scan results, nor have I had the various blood test results, and waiting on the EEG results. Phoned yesterday and left a message (VM) with my consultant but as yet no call back.

My baby still continues to display mini seizures and as the medication wears off it becomes very obvious, both arms now flinch, as do the eyes slightly and in a systematic rhythm. I’m use to it now, well I suppose I am, but I’m confident that there must be something out there that could manage/better control these seizures. My understanding is that I have to wait again for all the tests and then I will have a confirmed “This is what we need to do”

My baby has a cold still, continues to really arch her back and kick her legs and cry (I’m convinced in pain) but not the message all the professional are telling me. It’s colic, it’s this, it’s that. I’ve been to the hospital, I’ve been to my G.P several times, consultants, doctors and they all say my baby is not in pain!

Still waiting on the letter (SUI) from the NHS – NHS has confirmed receipt.

Kind Regards

Hiya

My son Tom was the same - he arched his back, stiffened, screamed and cried, in fact so hard that his hair and clothes would be wet through with sweat. They told me it was colic but it went on and on for months and months, until he was 10 months old when it seemed to start getting better. At the time we didn't know Tom had cp but what I can now see, given his cp diagnosis, is that because Tom has cp the tone in his muscles in his mouth and throat are a little floppy and the tone in his tummy muscles is high so when he drank milk - when he breastfed and later when he was bottlefed, he would gulp air down with his milk because he wasn't able to latch effectively (we could hear the air going in but not even a lactation consultant could help improve the way he fed) and then he wasn't able to get it back out again, no matter how upright he was or how much patting and rubbing I did. The more uncomfortable he was the more his muscles would stiffen therefore making the wind in his tummy even more uncomfortable and even more impossible to pass. It changed when he grew a little and also when he started having a thickener in his milk - this made the flow much slower so he could take it at his own pace and this seemed to prevent him swallowing so much air.

Have you though of asking to see a speech and language therapist who specialises in eating and drinking to see if they can assess how your baby feeds and therefore how they might be able to help get her more comfortable regarding any possible wind?

Good luck with it all - I hope the results you are waiting for help to give you a better and clearer picture of what is happening with your little one so that you can start to get the help you need.

Maria xx

Dear Maria,

Many thanks for your story and a great idea regarding the speech and language therapist. My baby does at times miss hooking on to the bottle, but once there appears to feed fine, but could be intaking access air - Thank you

Wram Regards

Rang the consultant who has informed me that the CT scan and EEG have confirmed cerebral atrophy and focal seizers, that my baby’s brain is not growing in size at the same rate of a baby of his age, however has not clarified anything we have not already been told.

The consultant has said that all the case notes have been passed to a neurologist and that we will have to wait for an appointment for the next step. The consultant said that the neurologist may request an MRI scan depending on their evaluation of all my baby’s medical records, he has marked the appointment as urgent, but cannot tell me when we will be seen. Left again not knowing and feeling very frustrated.

I said that my baby’s seizures had not got any better and was told to give it another week and then we will look at alternatives. Again I said I was not happy, but advised to continue with current medications.

I said to the consultant that I thought my baby was in pain and that was the reason for not sleeping, laying flat on the wooden floor (with a flat cushion support) you can put an adults hand under my baby’s back when having these what I call muscle spasms, really crying, screeching, kicking the legs vigorously, but again I have been told to continue. I’ve seen my G.P, Consultant, doctors, attended CT scan, EEG, medication, prescribed milk, and much more - just get this gut instinct that this just cannot be right.

The Doctor responsible for sending a referral letter so that my baby can start having physiotherapy has still not sent on the letter (4 weeks & 3 days) that will give my baby this so needed help. Left yet another voice mail and nothing as yet…..

Still waiting on the NHS to provide me with the SUI report I requested on the 14 Oct.

My baby’s seizures continue and now evident in both arms, and legs and eyes flinch. I’m not happy but advised to continue with what the professionals are telling me.

The Hospital has also now admitted another blunder where a SUI was never recorded as per the policy documented by the trust. My baby was born in May and the report should have been concluded within 60 days. 5 months latter and I receive this feeble excuse of an apology– The following email was written to me by the Maternity Risk Manager.

Thank you for your e-mail.

To clarify:
It is my understanding that an SI is logged onto the STEIS system by NHS London, this incident was not reported to NHS London.

An internal investigation was started into ***** condition at birth but the lead unfortunately left the Trust and the report was not fully written up at that time in the Trust’s format. The investigation report is now in the process of being completed, this follows the same format and process as an SI.

We do not have a ‘local internal departmental log’ for serious incidents to my knowledge

I can only apologise again for the delay in your receiving this report and assure you that we are taking the necessary steps to complete this work as soon as practical.
Many Thanks

NHS London SUI Policy (Pdf document) http://www.london.nhs.uk/webfiles/Corporate/Serious%20Untoward%20Inciden...

I am still waiting on receiving a letter to see the neurologist I know it’s early so I keep waiting.

Contacted and spoke to the "Head of Risk" at the NHS to say how discusted I was with the response from the Head of Merternity. Turns out that an investigation was started however the person carrying out the investigation was a contractor and was not fully updated/trained with the different reporting systems in place and left before completing. The report was then just dropped and left until I wrote to the NHS requesting a copy of the SUI. I have been told that the report will probally take around 60 days to complete as part of the report will include interviewing all staff that came in to contact with me. The SUI report will tell me what the "Hospital thinks" went wrong on that day.

I was asked by the Head of Risk how my baby was and this is where I mentioned that I was not happy as I have continued to mention to various Doctors, consultant, etc that I thought my baby was in pain, and not happy that my baby’s seizures have not got any better and in fact worse – much worse.

Out of the blue (and the consultant has never rang me unless I leave a voice message) my consultant rang me about an hour latter, and he asked how my baby was. I again explained that I was concerned. At first he said to up the perscribed medicine and said that it still can be increased yet again, then he said no let me contact the Neurologist and I will ring you back.

About 30 minuets later I am told that the Neurologist wants my baby to attend hospital tonight so that further investigations can commence, and today I should find out what assesment programme my baby will follow – to include an MRI scan. I broke down for a while because I did not want my baby staying in hospital again, however after a short while this is what I have wanted for many weeks. I want my baby checked as my gut feel is telling me something just does not appear right. This way I know my baby will be assesed.

I am still chasing the letter from the doctor responsible to refer my baby to see a physiotherepist I even said to the doctors PA I would come and get the referal letter and delivery it myself – but no.

IWaiting to be seen…..

Good on you for fighting for your baby and to find out what happened. Its a pity it has to be like this but negligence does happen and people have to be held to account to stop it happening to others. As you say, you know something is not right with your baby so its as well they do immediate investigations, but i feel very sad for the stress this is causing. You need all your energy to help your baby not waste it fighting people like this so I hope things get sorted out on that front at least and the ?seizures are controlled.

Its not always like your experience, my grandsons birth could not have been forseen and they got help straight away and the help we have had since the birth has been very good. Its never enough though and we have also had to get private therapy and work very hard ourselves on therapies, but it is worth it in the end.

x

Dear Renacahill,

Thank you for your supportive comments, and yes it is detracting my energy having to battle all the proffesionals - constant.

Good on your grandson and v glad he is doing well.

Warmest Regards

Hello *****

Many thanks for taking the time to give me an update during such a difficult time. I am so pleased to hear that ***** and ***** are being well looked after. I very much hope that ***** is well enough to return home soon.

Best wishes

*****
Head of Patient Safety

Sent: Thursday 3 November 2011 10:28

Dear *****

I have received a verbal apology and a reason as to why the Trust failed to report and investigate the incident as per the policy link below, and you are correct with your understanding that all now appears in place to obtain the hospitals report which I believe will show fundamental mistakes which caused or contributed to ***** cerebral palsy.

I’m sure you are aware ***** has be re-admitted to hospital for further investigations and this is a very difficult time for the whole family, however at last the professional listened, as it has not been from trying on several occasions to say that we felt ***** was in pain and that my baby was not responding to the prescribed medication – my baby seizures worsen and I thought would turn into a full fit.

I attended the hospital last night and on a positive note I was very impressed with all the staff, they were obviously very busy but made every effort to ensure ***** and ***** were ok, they even re-located ***** to a quieter location – so I thank you so very much.

Kind Regards

Sent: Thursday, 3 November 2011, 9:30

Dear *****

Thank you for your emails dated Monday 31st October 2011. My understanding is that the trust have spoken to you and confirmed that an investigation is now in progress and it has been reported as a Serious Incident to NHS London. In your email you have referenced the NHS London SI policy but this seems to be from 2009 rather than the most recent policy from 2010, which can be found at:

http://www.london.nhs.uk/webfiles/Corporate/Serious%20incidents/NHSL%20S...

The investigation report will be submitted by the trust and then reviewed by NHS London in line with the above policy. Once completed the trust will share the report with you.

Kind regards

*****
Head of Patient Safety