Can you help my frustration?
Mrs Fox
I sent you a lengthy reply last night, having read of your very upsetting situation. Unfortunately the Scope site crashed or some such and my reply was lost. Very frustrating and I don't have time to add the emotional stuff now, but I would just like to impart some very valuable information for you.
Re suing - a friend of mine has just won her case against her healthcare provider - similar negligence at birth. But be warned, it has taken nearly 3 years and was very draining on the family whilst worth it in the end.
Re physiotherapy - get immediately onto your Paediatrician. From my experience with my daughter (who has acute CP) they are the top of the pyramid for your child's healthcare and it is ultimately their responsibility to provide the best service to your child. Request an immediate referal for a paediatric Physiotherapist and Occupational Therapist.
Re communicating with health professionals - always make a note of the call and discussion and who you spoke to - you might have to refer back to this (especially if pursuing legal action). Always be consice and direct with your request and explain your dissatisfaction in the politeist way possible. Ask them what action they will provide to ensure that the situation is sorted. Ask for a time to ring back to check it's been done as promised etc. But be gracious, tell them you understand it's difficult but as your baby's parent you need to know and your baby has the right to the best care possible as you know they appreciate.
Re Disability allowances. If you have Carer's Resource in your area, ring them and they will come and sort it out for you. Your baby will be eligible for DLA (it just depends which level) and you will be eligible for Carer's Allowance if your baby recieved the middle or highest level of DLA, if you earn less than, I think, £90 per week and look after your baby for 37 hours or more.
Re your baby in general - contact Early Years Support - ring your health visitor to get your contact or go online. Your baby should be receiving Portage - an extremely invaluable support and developmental programme which is of immense benefit. I can't praise Sophia's Portage team enough and they will also be able to feed you into additional services / support in your area.
Contact chiropractors in your area and see if any specialise in cranial manipulation on babies and have experience with babies in general. We found an excellent chiro who worked wonders with Sophia. He totally rectified her mis-shapen skull, and helped align her body. It totally transformed her from crying constantly for literally 6 solid months, to being a happy, placid baby who slept. It took a couple of months, but really worked. Plus, her tongue also hung out to the side about 50% of the time and now it doesn't at all.
Stimulate your baby constantly - from my experience and immense amount of reading on children's disabilities - touch is the primary source for all development in a baby. Massage your baby daily, stroke them with feathers, blow on their skin. Make tactile cards - glue pulses, emery boards, feathers, wool, anything that has a texture onto A6 sized white card and place your baby's hands on them. With all things to do with brain injury repetitiveness is the key. Do the cards 5 x daily if you can and say '..... touch' and describe the texture in a very simple way. (This is only the first step but it's something you can do pro-actively now and know that it will help. Sophia has surpassed all her therapists expectations. On her first birthday her Physio said that when she first met her, she never expected her to be able to sit up independently, ever, and yet it was a target they set for her to be able to do for 30 seconds at 18 months. They found this absolutely incredible.)
And finally, you are going through hell, but it will get better, it really will. Try and get a friend or family member to look after your baby for a couple of hours to catch up on sleep. Don't be afraid to ask for help, it really is just too difficult to do it all on your own.
The very very best of luck.
Dear Sophia's mum,
I do very much appreciate you spending some time with your comments. I have noted some of the comments down and will follow then up as I belive they are very valid and good points - Thank you again
(I am so, so, please for you baby - well done to Sophia and mummy)
cranial manipulation
Carer's Resource DLA
Portage
Warmest Regards
My baby is still in hospital and still continues to have these seizures, and what has been very distressing for me is that she has been a pin cushion all weekend.
The hospital has tried over 20 times (canulars) where they have tried to get a line in to the vein however the needle has come out (tissue) they even managed to hit a artery by mistake, and all the time my baby has been awake and feeling the pain. The hospital then made my baby have some hair shaved from the head and tried in the head, but again that failed.
The promised bed at St Thomas hospital for the transfer today has been cancelled as they do not have a bed available. Now I hoping that the MRI still takes place Tuesday as promised.
The reason for the canular is so that the medication my baby so needs can get straight in to the system (loaded) and then to see if this will stop the seizures. The loaded dose can only be effective this way. So because they cannot get this administered this way, they compensate by giving orally which I have been told by the professional that this will not work. The hospital needs to get this done so that they can rule out something, but as described since my baby admission this has not worked, and my baby continues to have seizures. In fact to me they now appear more aggressive, more of a jerk, and now the facial muscles move – I’m so not happy. The whole process has been one hospital communicating to another hospital over the phone and suggesting what to do (all have failed)
I’m told that when my baby has the MRI (as my baby will have to be fully anesthetized) they will try and put a permanent line in her neck or groin.
Still waiting on the NHS to provide a SUI report.
Still waiting on the letter confirmation on my baby receiving physiotherapy.
Still waiting on the blood tests my baby had a few weeks ago.
My baby now is aware that *** is having the seizures and it’s horrible to see *** worrying
Should find out today about my baby’s MRI that it will take place
The senior registrar last night said they were trying to find out what time we would be transfered tomorrow for the MRI scan at St Thomas hospital it will be 07:00 or 08:00hrs.
I am so discusted that my poor baby had to endure over 20 attempts to get a line in for her medication over the weekend, to include having a part of *** head shaved and an attempt to get a line in *** head, only to be told yesterday by the senior registrar that the dose required can be administerd orally. I was fuming and ask why, and all they could say was that was the information given by telephone from the nurologist at St Thomas hospital -why!!
Yesterday I also challenged the senior registrar last night on doctors rounds, and without going in to finer detail with all my questions, 90% could not be answered as she kept saying this is not my field of expertise, I deal with chests, and all the instructions are from St Thomas and you will have to discuss these points with the nurologist tomorrow.
I am now at St Thomas hospital and I am so scared my baby will not wake up, I am really worried. I'm also really worried with what they may find.
Just left my baby, held ***hand whilst *** fell asleep. The MRI will take a while, not allowed with ***. Will be two hours and will meet *** in the recovery room. I have been told that my baby will not cone home until they get to the bottom of her fits. Hurry up two hours..
The worst day of my life as I have been told by St Thomas hospital following the MRI that my baby has CP in both arms and legs and both sides of my babys brain have been damaged due to the lack of oxygen at birth.
They have also failed like Lewisham Hospital to get a line in to *** body to take the urgent dose of medication - to see if this will stop *** fitting. St Thomas hospital has also tried in my baby's head and agained that has failed. Now there is talk that my baby may have to be put under again to get a permanante line in (did I not say to Lewisham that whilst my baby is under for the MRI can they not carry out this procedure - No they said as the medication given to my baby in *** mouth will be fine)
I have not asked because I do not want the answer but need to know what the medical severity of the MRI scan was 1 - 8 where 1 is the worst.
Have been told that my baby's fits are fits and not spasm's but they will be booking in another EEG (urgent) to get another reading. This was great news as spasm's are a lot harder to manage, and I am so worried about "West Syndrome" now it turns out that they could turn in to spasm's but at this stage they are not.
Whilst I had the meeting late afternoon yesterday it still has not sank in what I have been told. I am devistated.
I love my baby x
Just held my baby's hand and watched *** fall asleep and now *** is being taken to theater to have the pick line fitted. Why this could not have been done yesterday. I'm so upset (hope my baby wakes up)
This will be required so that they can treat my baby with the medication at the right high dose and straight into the blood stream..
The pick line has been fitted - stiched in and now we are waiting on the tests to come back to see how much of *** medication is in *** system. Once this has been confirmed my baby will get the loaded dose through *** pick line and praying this will start to reduce/stop *** seizures.
My baby has also had the EEG carried out. Worried with what they may find.
Hello mrs Fox. You are all going through the most awful time of it at the moment and my heart goes out to you. I pray they will bring the seizures under control and everything settles down for you all. I think you have been treated very badly all through this, it is disgusting how things have gone for you. It is not always like that believe me, my grandson had the best treatment available at the time. The MRI results are very upsetting but its not always so bad with the outcome. Babies are very resilient and seizures can stop with proper medication.
The hospital should have a chaplain or priest to talk to you if you have strong religeous views, and sometimes this helps.
kate xxx
I was in your situation nearly 9 years ago and I did not know where to turn to get help with my very unsettled baby. He was in shock from the HIE and extremely irritable. I was recommended to take him to the Osteopathic Centre for Children and it was the best recommendation that I was given. Treatment really calmed him down and he was a lot happier and more settled. They specialise in the treatment of very sick infants as they also treat premature babies in Barnet Hospital and North Middlesex. Here is the link to their website:
Dear Kate, Mafala,
Many thanks for your support and updates, by replying to every comment it is my way of confirming I have read your stories and very much appreciate all comments.
Kind Regards and Thank you
Hello,
As a family we were all devistated to have been told that *** has CP in both arms and in both legs, and that *** has brain damage in both sides of the brain. *** continues to fit and yesterday *** had 62 fits in 24hrs, and this morning has had 25 fits.
Lewisham hospital did not pick up the brain damage in both hemispheres, nor did they pick up the damage in all four limbs dispite our continued request for an MRI scan. We were told everything can be picked up with our current processes - numerous Caraial scan, CT scan and EEG all the above was never picked up. The MRI was always the gold standard but we were told No (we even offered to pay private and told again you would not gain any further information)
Lewisham also despite many attempts to say ("we are not happy with the amount of seizures *** was displaying") continue to treat *** as an outpatient and many telephone conversations. We were told to keep continuing with the perscribed medication. We continued to say it is not working. Lewisham was told from the start it was a little flinch in the right hand, then progressed to the arm, then the leg, then the eyes, then the face and that they started to get more vigorous, but again Lewisham keept saying take the medicine. We was also very worried and asked if the fits would damage *** brain further, however the confirmation from Lewisham was that it would not.
At Lewisham hospital *** was treated like a pin cusion as in 12 hours *** must have been pricked over 20 times to get a line in for *** medication, all the time *** could feel the pain and I could also feel *** they even managed to hit an artery by mistake, it was very distressing. They could not get a line in and so they said they will try in *** head. They shaved some hair off *** head and again failed to get the line in.
The next day they tried and again failed. The senior registrar said that we no longer need to get a line in as we can give *** the correct loading dose orally. I was absolutely livid to find out that we had to go through all this pain and suffering only to be told *** did not have to have a line in.
I said to the senior registrar that night that *** is having *** MRI tomorrow and whilst *** is under the anesthetic to put in a pick line. Please do not miss this window of opportunity. She said it was up to the people as St Thomas but would pass on my message. *** had the MRI and they did not put in the pick line. Yesterday *** had to be put out again so that a pick line could be stiched in, and advised this would be an absolute must in order to get the medication needed and at the correct levels. (St Thomas confirmed orally would never had worked thats not what Lewisham told us)
Please can you kindly provide me with an update to the SUI report?
Dear ***
At present I am awaiting witness statements from those involved. These are part of the process, which as you have already been advised was not completed. We will then convene a panel meeting to review all the evidence to ensure we have captured all relevant details before completing the report. I will keep you informed of progress weekly, as discussed with the Trust Risk manager, ***.
The possibility of arranging a meeting between the family and ourselves was discussed with *** before *** was transferred to St Thomas’s. This will be arranged once *** feels able to attend as I know *** had some questions and it would be really useful to have *** account of the labour and birth.
Please accept our apologies again for the delay
Kind regards
***
Lewisham University Hospital
London SE13 6LH
Still in hospital (week tomorrow) and whilst the seizures have reduced they still continue. They are more likley to happen when my baby is relax or just dropping off to sleep, however still apparent throughout the day. They appear systematic - legs, arms, and eyes all move at the same time, and now the eyes roll up. They appear quiet jerky and vigorous and I am very worried.
The pick line got blocked yesterday, however they managed to clear this morning.
Have been told that my baby needs to see an eye specialist as on occasions *** goes boss eyed.
My baby is still very restless and does not sleep for long and I am exhausted.
Regards Xx
Hi MrsFox,
I feel so angry at both you and your daughters treatment. I was almost crying reading your posts.
You are being an amazing mum by holding everything together and going through this horrendous ordeal. I hope your daughter comes out of hospital soon, you must be desperate to have her back in your arms. I hope the clinical negligence case goes through and you get some financial help to pay for the care that can make a difference to your baby's life.
My son has cerebral palsy but luckily only a mild form. We have found two companies that have helped us:
BIBIC is a charity that came to our house and spent the day with my son, and then put in place a series of exercises and stimulating games etc for us to do at home with him. I believe they have their foundations in occupational therapy. They recieved a grant from the national lottery and are currently running an outreach programme to travel to children's homes, and though they ask for a donation it is up to you how much to give. This is there website
The next company has helped my son achieve his potential the most:
www.movementandwellbeing.com/about-us
This therapy is called 'Anat Baniel Method for Children' (ABM) and works on the principles of neuroplasticity- that is the brains ability to form new nerve pathways and reorganise itself. It is mostly available in America, and there are just 2 people trained in this therapy in the UK, and they are based in London. We have been taking my son there since the beginning of this year and the changes are quite remarkable. The cost is £60 per lesson, but worth every penny. The good thing about ABM is that if there are no improvements after 5 sessions then the therapy isn't suitable for your child, so atleast you know it isn't an ongoing thing with no improvements. If you google 'Anat Baniel' you will come up with the American site and there are lots of parent stories from children with every sort of brain injury, both mild and the most severe, who have seen benefits from this therapy. If you get a moment then I would urge you to look at the site.
Keep us posted on your baby; I'm thinking of you and hoping the future will get brighter.
Liz xxx
Dear Liz,
Thank you for your kind words and the two suggestions. I am very interested in ABM and will research that more.
Wishing you and your son all the best.
Kind Regards
Dear ***
As agreed I am writing to let you know the progress of the SI Investigation.
I am still awaiting final witness statements from those involved in the care of ***. Once these have been received a meeting will be convened to review all the information and the report will be completed.
Kind regards
***
Maternity Risk Manager
Lewisham University Hospital
After nearly three weeks in hospital my baby and I are now home. I have stayed strong but exhusted. My baby and I watched the Lord Mayor's firework display which was very good.
My baby has not fitted for three days now and I am so happy, however not sure if the trade off is one of the drugs is making my baby a little drowsey. I have been told this is to be expected and in time my baby will adjust with the medication. My baby has to take quiet a few oral doses of differant medications.
I've sent off a letter to the medical records office (paid the £10:00) requesting copies of the last three week stay in hospital and also to include the CT Scan, MIR scan and the two EEG results.
I have an appointment to see the physio this Thursday, and waiting on the eye appointment to look at my baby going boss eye'd from time to time.
The head of neurology I questioned as to why/what caused the brain injury and he said that he has looked beyond the birth itself and could not find any alternative reason other than it was the birth itself as to why my baby was starved of oxygen - My baby was Normal - I am devistated and to be told now that my baby has CP in both arms and both legs and brain damage on both sides is just Indescribable.
I am a mother/mum but I am now also a full time life sentance carer - I do not mean this wrong in any way but when other teenagers are being teenagers I will be a carer, and when adults are being adults I will be my *** carer. I wil be there till the day I die loving my baby/teenager/adult but will never stop thinking what life could have been if it was not for that particular Midwife that was supposed to provide my baby and I with the reasonable care she had been trained to do.
Regards
Friday I received a letter from Tim (Excecutive University Hospital Lewisham) providing me with my first written apology surrounding the hospitals SUI policy reporting.
I have been told that I should receive the final signed off copy around 9th December 2011.
The SUI report will provide me with what the "hospital thinks" went wrong on the day I entered the hospital to give birth to my baby.
Regards
My baby had *** first Physio session 28/11 and I was very please that these have started, to me it is a very important part of the process my baby needs to improve in any way large or small, however the next avaliable/scheduled appointment is for the 13th December - What's that all about, ever 15 days just cannot be the correct level of Physio for my baby with Quad CP, is it?
That's what I have been offered for Tom - an appointment every 2 - 3 weeks. I am supposed to learn what sorts of exercises to do with Tom in the time between appointments so basically I am my son's physio for 17 out of 18 days and then he gets a session with his trained physio and then it's back to mummy physio again! That's in part why I chose to get Tom started with Conductive Education groups twice a week - I knew he needed more than the NHS physio that was being offered.
Maria x
Received an email Wednesday from Maternity Risk Manager Lewisham University Hospital
to say that all the staff that came into contact with me during my birth have been interviewed and statements taken and on Thursday the pannel was having a meeting to discuss all their findings.
The report will be submitted to NHS London where the final document will be written up and signed off. I have been told all should be completed and a copy sent to me on the 9th December 2011.
The SUI report will provided me/family with what they think happened on the day my baby was born and starved of Oxygen.
Regards
Hello Maria,
Thank you for your post and love the terminology "Mummy Pysio" Agree 100% that the in-between is for me to learn and carry out the exercises required. However I feel that this should be after a few sessions with the professionals not just after day 1. My view is that my baby should have professional care/pysio twice a week min to start – yes I know you are all shouting at me get with the real world. What’s that money can’t buy you your health but it sure would help.
I feel that my baby needs more professional pysio help at *** young age and I know would make a huge difference so will be looking at what I can do for *** outside the once every 15 days – that’s pathetic.
SUI report should be with me this Friday – This I will then pass on to my solicitor to which I will find out if there is a medical negligence case to be heard.
Regards
Hiya
I absolutely agree that It isn't how it should be - our kids should have physio once of twice a week but unfortunately that's not what gets offered. I also agree that it's really daunting to get started after the initial sessions because we have no idea what we are doing really. All I can say is any exercise is better than none, that having a nice massage first to loosen up those tight muscles is a good idea and to try to make it fun. I alsways leave physion with maybe 2 out of the 5 things we have tried in my head and the others lost in the mummy fog that sits between my 2 ears and then I worry that I'm not doing enough. I have only really been able to stop worring since I started Conductive Education because firstly I attend 2 classes a week so he gets 6 hours of one to one time with me working on his mobility and secondly the routines we do are the same each week and easy to remember at home. It's also easy to build into your every day life (although I don't by any means do everything the Conductive Education way as I have 3 young kids to look after and sometimes you do things the quick way, not the right way!).
It's unfortunate that for the first time ever we find ourselves in need of all the services for our kids that seem to be so short of money due to the economic climate right now - I always thought a child with a disability would have access to everything they need quickly - that they would be a priority. How wrong I was. The fight for everything is just exhausting and nothing comes easy.
Maria xxxx
Hi Maria,
Thanks for your comment - as with all comments I am so greatful as I do pick out some very good points/ideas. All the best to your family and have a great Christmas.
Kind Regards
Today was going to be so special as I was taking my baby to London to see Father Christmas, however also today I have noticed my baby strating to have mini fits again, only ever so slight but the same as when *** first started and spent nearly three weeks in hospital.
Contacted the consultant who looked after us and have been told to up the medication, and if that does not work we can up it again (sound very familiar)
I am still going as planned to see Father Christmas
I have been following your story with that all too familiar feeling of frustration, sadness and anger. I just want to say as a family we are thinking of you and your little one. I do so hope that you both have magical memories of your visit to meet father Christmas........... in our experience sometimes the most magical experiences are the ones that others take for granted.
best wishes xxxxxxxxxxxxxxxxx
Dear Libis Mum,
Thank you for your kind words - Father Christmas was a very magical/special day - We both had a fantastic day - Merry Christmas to you and your family.
My baby continues to have very slight fits and advised the *** needs to put on more weight before increasing the medication. *** has gained weight but still not enough.
Lewisham Hospital’s deadline for the SUI report has been moved. I am now told I should have the final report sent to me Friday 16th December. My view is that if anyone has the slightest doubt about the care received then you should insist on gaining this report. This is the Hospitals confirmation of the events that happened that day/night - their professional opinion as to what went wrong, lessons learnt, and re-training/training to staff so that it DOES NOT happen to someone else. The report will of course affect individuals in different ways and maybe not what you want to know, but in most cases it will draw a line underneath the circumstances if where applicable worked alongside a qualified medical negligence solicitor.
Regards
Fight for everything – As you know I was not happy that the NHS was going to give my baby Physio once every 15 days. Just got off the phone and after a struggle and for the time being they have now agreed to see my baby once a week – Fantastic, this is a key stage in my baby’s developmental requirement for professional physiotherapy and yes I will learn and continue at home but not after one lesson, and in this instance you cannot better the trained professionals.
Have finally receive an appointment for my baby’s occasional boss ‘eyed problem – this is in Jan 2012.
The chair fitting was supposed to be today however the only person available to do this has phoned in sick.
SUI report Friday 16th December.
Continues *** stay in hospital and the current combination of medication has failed to reduce or stop *** seizures. Monday they are transporting ***** to St Thomas Hospital with an MRI scheduled for Tuesday morning. More blood and urine tests have been taken and along with *** medication to try and control the fits they are now giving *** vitamins.
The trust has now asked for a meeting with me and family members, however I am currently 100% on attending to my baby’s requirements. I also feel that until the SUI is completed I do not want a meeting.
I am very lucky - I had so many family and friends visit us both in hospital over the last few days. They have kept me strong at such a difficult time. I am an emotional wreck at times and I have cried so many times but with their support I remain strong. I am also beginning to be more assertive with the medical staff and on the ball with all the medication names, when *** had the medicine, etc.
I know I'm going to find it difficult tonight as the plan is for my partner to stay overnight at the hospital and I will stay at home. I so need my bath and my bed – just hope at the time I can pull myself away. (my partner is great so it’s not that, it’s leaving my baby and his got to juggle his job)