The letter and story that changed me, and now I'm different and driving everyone away with my possessiveness of the children. After this event I had several miscarriages and finally 6th time lucky have my little girl delivered by C Sect.
Dear, Chief Executive,
I have been forced to write to you to ask that you look at and investigate the treatment my family and I have received at the hands of Queens Hospital. At several stages I hope that you can appreciate I have done everything that I can to be understanding of the strains on the NHS but failure after failure forces me to finally give up any hope of ever being able to visit this hospital again.
I do want more children but you have robbed me of ever feeling secure in being able to do that under the care of BHR. I have been treated dreadfully, my family torn apart and times that should be precious and irreplaceable have been tramped on by employees of BHR.
Even now trying to get access to mine and my son’s records have been ridiculous. I handed in a request for them on the 17th Dec 08 and have chased them every week since but my calls don’t get returned, I’m told that Ben’s have been lost. After you have read what has happened can you not see that I need these to feel secure I want to be able to never feel that anyone can misdiagnose my son or try to take him again.
What has been done to us will never change I cannot relax with my son. Going back to work as planned is just not something that I am able to do at this stage. I can’t even leave him playing at his playgroup, if other babies come near him I pick him up in a panic that if he might get bruised or injured and you’ll try to take him away again.
You can’t make me feel better but I want to feel that you understand and take seriously the impact you have had on our lives.
Our loses of time, finances and memories just can’t be repaired no matter how much I try to put this behind me I know that it never will as we have to accept that this could reoccur anytime until Ben is 7-8 years old.
I still cry at the thought that I might lose him as I came so close, it feels like he is on loan to me. I adore my son but what we have been through is not right or fair. I accept that everyone says I can’t wrap him in cotton wool but they don’t understand I have too I can’t help it. I haven’t left him since, not even just with his dad.
My saving grace is that I have a great family network and partner otherwise I think this would have broken me as I have no faith in my GP or Health Visitor neither helped me when I needed it the most.
My story is divided into before Ben’s birth and after.
I wait to hear if you feel I should find this is acceptable.
It started in November 07 I visited Queens A & E after returning from a 3 week cruise where I had been very ill and over several days I had vaginally passed tissue and clots. Because of the days between my arrival back in the UK a urine test was unable to show if I had been pregnant as I had suspected, instead I was advised that the tissue which was about 2in by 1.5cm was sent to histology.
Despite calls to Queens and a visit to my GP my sample had been lost and I was unable to ever have it confirmed if I had lost a baby.
The next month a fell pregnant again, sometime towards the end of February I started to bleed I called my midwife who told me not to worry it was probably cervical bleeding. I have this several times and although it disturbed me I trusted in the advice I was given.
One Sunday in March whilst driving home I had severe bleeding and abdominal pains, I detoured to Queens A & E. Triage gave me pads and I waited to see a doctor. After sometime I was shown into room and spoken to about the bleeding I was surprised and concerned that still no scan or examination was offered and I became very upset at the prospect of losing my child. The doctor explained that she felt I was very stressed and need a little tlc and that to ease my mind she would do a scan. The scan showed an active heartbeat and I was too be sent home, still upset and whilst still on the ultrasound bed I complained that I was not happy to continue bleeding and that no one would look or give me any answers. The doctor said that examinations were not routine. Still unhappy that my problems were being dismissed I showed her my clothes and pad to indicate that this was not a little bleeding, very surprised by the amount she examined me there and then. Her reaction was one of surprise and I was immediately moved into a bed in the ward across the hallway. It seemed I had a large cervical polyp that had burst. No information was given on how this would affect my pregnancy.
The next day I was sent home, no examination or comments were given. Again I had to push for help and understanding of how this would affect my pregnancy. I was given I very short answer that I was being referred to a gynae doctor who would discuss this with me.
I waited several weeks for an appointment and when visiting King Georges for my NT results I asked the midwife. She said she had no time to help me but I could make an appointment myself at the desk, which I did with Miss Tebbitt who I had seen privately in December 07 for fertility assistance not knowing at that time that I was infact expecting.
I saw Miss Tebbitt several times during my pregnancy and she cauterized my polyp which seemed to have resolved the problem.
Towards the end of my pregnancy I was found to be deficient in Iron and B12, I had injections and saw Miss Tebbitt/other covering Drs occasionally. During one of these occasional visits Miss Tebbitt told me that my baby was very large. I discussed this with one of my midwives and she was unconcerned. On my next visit back Miss Tebbitt was busy and I saw a Registrar I discussed my concerns regarding size with her and although she did not share Miss Tebbitts concerns she felt that as my due date was only a week or so away I should have a sweep on my next midwife visit.
This was done for the first time and was unsuccessful, I was told that my cervix were posterior high and could not be reached.
Several days later it was attempted again by a different midwife and I was given the same response, by this time my due date had past and I was very anxious about the size of my baby, as I was 9.4 when born and have a very large head.
My next visit was to see Miss Tebbitt but she was busy and I saw a male doctor. He was very helpful and understood my concerns and allowed my request for a female midwife to perform my third sweep. I was told that my cervix were still posterity high and the midwife discussed that I may regard a C-Section with the doctor whilst I was present.
On my return home I called my midwife and discussed my concerns when I mentioned the C section she became extremely annoyed that I had been told this and said that they had no right to say this. She ended the call to find out from the hospital who the attending midwife was. When she called me back we had a very strong conversation because I felt that as the only person to have never examined me she should not dismiss the C section option. I had never previous shown any interest in the form of delivery and was shocked that her response was ‘labour is pain’ and that even if I continued not to dilate and my cervix remained high I would still be forced to ‘give it ago’ via an induction even if a C Section was necessary.
We left the conversation with me still very unhappy I had no idea that a mother’s choices, feeling and concerns were such a low priority to BHR. I never expected to demand a C section but I did expect that the options for the safest and best options for mum and baby would at least be priority enough to be discussed.
An induction date had been booked and I had no choice but to wait for this.
My waters broke at around 2am on the morning of Saturday the 13th; I went to Maternity triage at Queens. Facilities and circumstances in the waiting area was atrocious ladies were leaking, screaming and being kept in an unclean environment for extensive times. I was shocked at this not only did it heighten my fear as a first time mum but I could not believe that the lack of beds left women in the developing stages of labour without medical attention.
After quite a wait I was taken into triage, the treatment was again awful. No one spoke to me it seemed one midwife was left attending to everyone and she was as a result hostile and unhelpful. She strapped me to a monitor and left me for a long time, when I tried to ask questions she left to attend someone else and only came back to give me a form to go home. The document given to me was badly typed with errors and hand written adjustments made. I was told that I needed to come in every morning and that my baby would need to be born with 48hours, after 72 there would be a risk of infection so I should monitor my temperature.
I left unsure, unhappy and worried about staffing and facilities as I had not expected it to be so poor. As I left and walked through the waiting area things had got worse, the queue of mothers in pain, leaking and going into labour in a dirty, unmonitored waiting area, with filthy toilets, little lighting or heating and only a few chairs nowhere near enough for the amount of people needing them.
I followed the guidelines on monitoring for the Sunday but my Sunday evening I had started to bleed and went back to Maternity triage. The wait was even longer than the day before and I was told that it was probably the plug but that my best bet was to go home after my obs as my induction was booked for the next day.
On the Monday morning I called to book myself in as instructed and came into the hospital as told. On arrive I was told that they was no beds left and that no one had booked me in when I called. I expressed how unhappy I was as my waters had been broke sometime now and I was pointed out who I had spoken too.
Still I was left whilst all other mums where taken through. Eventually I was taken to a bed when a female doctor examined me she asked if anyone had ever discussed caesarean section with me as it may need to be considered. I mentioned that I had heard before that my cervix were post very high and that I was not dilating she agreed and said we should try one pessary to see if this helped but otherwise a C section would need to be considered.
After the first pessary had been in placed I was moved beds and when a new midwife tried to push me on to a second pessary I objected as I had not been examined and it felt as if there was no intention to discuss the concerns raised by the doctor or to observe my wishes or ally my growing concerns.
Despite my insistence I was told that no one else was available and that getting on with it was in the interests of my baby.
I reluctantly agreed on the basis that if this did not work I wanted to be examined by a doctor to be reassured.
Nothing did happen and again I was very heavily pressure to have the drip, I stated my case and refused to be inducted any further without an examination or epidural.
When a doctor was brought to see me she was very rough with my examination asking ‘what was the fuss’ because my cervix were still out of reach it was painful but she wanted to go ahead with the induction. I wanted an epidural and I also wanted to know what the next stage was as I was concerned about the length of time my waters had been broken, as it was over 60hours at this stage. She argued that it was 48 hours and refused to listen. Because of this I got upset as I was feeling scared that no one knew what they were doing no one would listen to my wishes or accept that I was right how long my waters had been broken. My partner argued for a good 10 mins spelling out each day to the 3 professionals now present that we were right and in danger of going over the 72 hours in the early morning. Again very rude and angrily she slammed our paperwork done on the bed and ‘said give her what she wants and left’ I should not have been begrudged an epidural, pain relief is my right and I was tried of my rights and concerns not being listened too.
I also know that I had been told my baby was OP and that they would be encouraging him too turn but again no one explains.
I waited some time for the epidural and the anesthetist administering it found that he could not secure an iv in my hand, my veins were collapsing and after 3 attempts (one in each hand and one further up my arm) he decide to use a pediatric needle but advised that it would not be possible to give blood through this. I have always been needle phobic and found these very painful as both hands swollen up very badly but the epidural insertion went very smoothly and without incident.
It is sometime on Tuesday afternoon I am not dilating and the baby is still OP. My mum is sent home our midwife advises her that nothing is happening she should go home for some rest, she mentions 4 hours and says nothing will happen before then. She also urges my partner to leave saying that he must get some lunch and rest as it is her lunchtime and she must go now. Ken tells her he will go for a walk. I have been turned on my side as my baby’s heart rate is dropping and I have been complaining about pain for a little while. I am releasing the epidural but it doesn’t seem to be working. I tell the midwife but she says it’s just the contractions growing. She says she must go to lunch as otherwise she will miss her time, despite my pain she goes without examining me and having sent everyone away I am left on my own in considerable pain.
After about 10mins Ken comes back, and I am in agony I ask him to go and find someone. He tries and in the end another midwife agrees to check in on me. When she does she is very surprised and says mum you baby is there we need to push.
It gets very confusing as I know that baby is stressed and OP, I know that the last increase in the drip has caused me to dilate unevenly. I also know that I was screaming in pain as they had to cut me because my epidural had been pulled out from the neck when I was turned on my side over 1 hour ago.
I use gas and everything is quite difficult to recall without my partners help as he never left me after those 10mins. I know I am cut I know blood is everywhere, it hits the doctor cutting me in the face and she shouts for help to a student observing. It is panic stations with doctor and midwifes injecting, pulling cutting and trying to get my baby out.
When my baby is born he is placed on my tummy with his spine towards me, he doesn’t cry or move and is taken away quickly. I’m not sure what is wrong but shortly afterwards I am told that he is poorly and has suffered some injuries to his head and will need to go to NICU. He is given back to us for 10mins and we are allowed to bring our families in 2 at a time. He has cuts to his head done by either the rotational forceps or the cap that kept pulling off. Then he is taken away.
Ken goes to see him but I am left on the bed until after 10pm, I am covered in blood and vomit (I vomited after giving birth) and cannot feel my legs. I found it quite surprising after everything that has happened no one checks on me and we are there for many hours
About 10.30 we are moved into the hallway in a wheelchair to wait for a porter. We wait for quite a while in the same state with me but when I am taken up to the ward the allow me to have a quick look at Ben, NICU even give me a picture of him.
It is very late and everyone on the ward is sleeping but they all have their babies with them. I am shown to my bed but have not yet had a wash and I am still covered in blood, with my hands so swollen and the pad placed on my stitches stuck in place. It’s not surprising that I faint in the loo whilst trying to wash with the bidet. I pull the emergency cord and I am taken back to my bed.
About 4am I can’t sleep the other babies are crying and need feeding. I decide to go to NICU. I realize now that this was not wise but there is no one on the front desk and I am a new mum who was very emotional and needed to see my baby.
I get to NICU and sit with Ben, I’m not allowed to touch but I just want to be here so that’s ok. Unfortunately I faint again and get taken back to the ward.
The lady who is in charge is the same person who found me in the loo and she quite rightly tells me off saying that someone will take me but I must not go alone.
The next day is quite hard, baby bathing and other mums playing and feeding their babies. But Ken comes early and my mum and dad visit. Ken takes me to see Ben and we get to sit next to his incubator. In the light of day his head is shocking and we are told that he is not feeding too well.
I go back to the ward so that my mum and dad can see him and 30 mins later they return in tears saying he has been sent to King Georges. It seems the nurse responsible for him was the one telling us he had been transferred, fortunately he hadn’t but worrying that he was under her care.
That evening I ask to be taken to see Ben but I am told by the nursing staff that ‘Charlotte is sleeping and wants at least 2 hours’ so no they can’t take me. I go back to my bed but I do get upset and after a while I go back and ask again. Now I am told they are too busy to take me down, I tell them that I will take myself and after a while I am told if I wait someone will walk with me.
I stay with him for a while and always found the evening staff to be lovely. I found some of the things they said upsetting i.e. when asking about holding him I was told ‘when he is here he’s not just your baby he’s our baby’ it was meant in the nicest of ways but its hard as a new mum to share your baby with a stranger. You want to be the only person who gives him love and comfort.
The next day I am visited my a doctor who asks how I’m feeling, we discuss the fainting and I say that I am feeling much better but do still have tired dizzy spells. I am asked about a transfusion and I say I would prefer not to have one but I am told a simple blood test will decide if I need one. After about 10mins I am told that I am going home and need to move my things to the breakfast table as my bed is needed. I sit and wait for a midwife to see me at the table. When she does I remind her that I am due a blood test, she looks at her notes and says ‘you declined’ Ken and I explain that I did not I said I would prefer not to have a blood transfusion but the blood test would advise if we needed to consider it we ask that she changes the notes as I feel quite strongly that I haven’t refused anything.. She says she will see and goes away. About 30mins later she doesn’t come back and I am discharged
I should have pushed to get it sorted out but really I just wanted to see Ben and since its after 12pm now I leave to go and see him.
When I get to NICU I am told for the first time that I am allowed to feed him!
It was also my plan to breastfeed and with some help I try, he doesn’t take to it straight away and I am told to try again for his next feed. We decide to go home as Ken feels I need to rest as I am feeling faint and a
bit sick. But I haven’t eaten as the doctor came to me during breakfast.
We go home and I try to rest whilst Ken makes me beans on toast. I have a short sleep and then we return to the hospital. I want to feed Ben but its change over and we are asked to wait, when we are allowed to see him it seems he has been fed already. I am disappointed but also still feeling ill and have to leave as I have started vomiting.
Once we are at home the vomiting worsens and I don’t tell Ken at first but every time I vomit my bladder empties. As the night wears on I am having hot and cold fevers, sweats and very violent vomiting with my bowels and bladder emptying involuntarily. We call an ambulance as I feel like I did on the gas, distant and a bit dilearious.
The ambulance men are great and take me in to A and E who agree that I need to be kept in. A and E arrange for me to be moved to Cornflower B but a shortness of porters means that they ask Ken to take me up. He of course doesn’t mind and we go straight there.
He buzzes the intercom and a nurse comes out, we explain that we are expected and that A and E have arranged a bed for us but she refuses to let me in and says you are a maternity patient and not our responsibility and tries to send us back to A and E triage. I am not happy as I cannot sit in a waiting area with other peoples children not able to control myself, I am bleeding heavily, vomiting and have no control over my bowels or bladder I cannot believe that we get bounced back and forth between the departments under in the end I tell Ken to take me home. It wasn’t wise but I couldn’t take any more at this stage. Maternity triage would be at least 3 hours.
The vomiting does not stop and by the next morning my midwife sends me back in after failing to take blood because of my veins, this time straight to Cornflower B.
After seeing the doctors and varies attempts to secure blood and IV and anesthetist was brought to take over. Six attempts fail with my veins collapsing and eventually it is secured in my left leg. I am giving
blood and fluid on the Saturday morning as well as anti- sickness drugs. I know that my son is being allowed home today and I am told that I will be allowed to go providing I do not react to the blood.
Once it is finished I wait to be discharged. This takes a long time and I’m keen to go home as Ben is ready and waiting in his car seat. We sit outside and wait in the waiting area. I go back to the front desk about an hour later and I am told that they are waiting for pharmacy as I am being given more anti sickness to be taken home for when and if I need them. I ask if I can come back for them as Ben needs feeding.
We get home and things seem ok I am tired but this is to be expected, at about 11.30pm and I start to be sick again. I get up from bed and go downstairs hoping if I cool off it will go away. I manage to hold it off for about another 1hour as I ring the ward and ask if my meds are still there. The nurse is the same one who gave me the blood and fluid earlier that day and she is very help so I decide to go and get them. Ken and Ben are both sleeping so after the week that we have had I decide not to wake them, the hospital is only 10mins away.
The minute I get to the hospital I start to feel really bad and now can’t stop being sick in the bowl that I have brought. I get to the ward and collapse at the desk. I am helped into a bed in an empty ward.
My obs are done but I am told nothing else can be done until formally admitted by a doctor at around 9am the next day. I vomit and continue to urinate until there is nothing left.
When admitted into the hospital probably the next day I see a number of doctors. I am told that I have an infection but never really given a diagnosis. I ask if this could be from my waters breaking but nothing is confirmed.
I am kept in until Monday evening and given lots of tablets including more anti-sickness.
Thursday 13th November 2008
It was around 9pm after sitting Ben forward to wind him that I first thought the loose skin around the base of his head looked a little thicker, we were at Ken’s mum and dads when I mentioned it, no one else thought it looked any different.
Friday 14th November 2008
Swelling first noticed late morning of the 14th November. Rang Health Visitor Linda Eastaugh who was not available. Left a message regarding the return of caput swelling. Called Annette Massey Reed, she has 5 children wanted some advice, she had not heard of it but none of her children had ever had caput swelling at birth. Called Ken Massey at work (Ben‘s dad) explained to Ken that it looked as if caput was returning, Ben was very well laughing and smiling, not at all unwell so moved plans for my birthday and met Ken for him to look at. At this point approx 30mins Linda had not responded so I left to meet Ken for his opinion..
12.15 Met Ken at our offices in Basildon, swelling was a little more obvious and decide to visit A & E.
A & E Basildon waited around 40mins until seen by triage, Ben’s observations were all normal and moved to a side room in paediatric dept to wait for a Dr. After another 30 - 40 we were taking in to see a Paediatrician and assisting nurse. Ben’s head was fully examined and the Dr was very clear that Ben was in no pain and that this was birth swelling which could reoccur. Description given to us was that undeveloped skull and separating 5 layers of infant skin would allow water to permeate and flow between the layers until his head was grown, skull knitted together.
I asked her if two changes I made this week could have affected Ben in this way.
The 2 changes were, I had been tucking a posseting cloth under Ben’s chin to encourage him to lay on the other side, he will only lay one side and his head is very misshapen. He had reached the second stage in his Maxi Cosi car seat which allowed me to remove the infant U shaped pad. She placed her hands on my knees and assured me that this was as she had explain not sometime I had caused.
She showed us adult skull pictures as she could not find any infant ones and assured us that by placing two thumbs onto the swelling and attempting to disperse the fluid that Ben’s skull was intact and he was not in pain nor was the fluid from inside the skull area.
Ben remained well all over the weekend.
Monday 17th November 2008
Had an appointment for a smear test at 11am with the surgery nurse, discussed my concerns with her and showed her Ben’s head. She agreed that there was no cause for concern and had seen larger caput. Ben was given his 8 week jabs and for the first time became a little grumpy. She was also very concerned about my excessive scaring and said that I should speak to the Dr about this.
Returned home where I received a call from Linda my Health Visitor regarding my call to her on Friday. Told her of my concerns and relayed conversations with nurse and paediatrician. She said come to ‘weigh in and let me reassure you‘.
Drove Ben to Children’s Centre for 1.30, Health Vistors were late and the queue of mums was very long. Sat down to wait and met Star one of my Midwives she enquired about my health as it was know that I had had a bad time. I repeated the conversation regarding my scarring with the nurse and also told her about the returning caput swelling. Ben was sleeping in his car seat so she placed her hand inside the head area and said ‘I don’t think its anything to worry about’ she offered to see me on Wednesday to examine my scarring.
In the meantime Health Visitors had arrived and begun trying to organise the approx 30 mums who had arrived. As Ben was still sleeping I spoke to Linda about not weighing him as he was very grumpy from his injections and if she felt he was ok I would not wake him by undressing him. Linda agreed and I left.
Late evening Ben was very restless his temperature was rising despite giving Calpol as advised.
12am approx Ben would not sleep and had been crying for some time have not given any more Calpol as the directions indicate that babies under 3months should not be given more than 2 x 2.5ml doses. As Ben’s temperature is 38.7 I call NHS direct for advice. I speak to reception, then a nurse and then a GP after a series of questions I am told Ben can have Calpol every 5 hours if necessary. By the time of the GP call back it is around 2am and he is asleep so another dose is not necessary.
Tuesday 18th November
I begin my second period in two weeks.
Wednesday 19th November
I rang my midwife Fiona as I did not have Star’s number. I left a message explaining that unexpectedly I was having a period if she could let Star know as I would expect she would decline to examine me as planned.
Thursday 20th November
Visited Ben’s grandparents in the evening. Ken’s mum was concerned about Ben’s head. I told her what I had been told having discussed it with a number of healthcare professionals.
Friday 21st November 2008
Visited my parents, my mum also raised concerns regarding Ben’s head. I relayed my conversation to her and pointed out that Ben was very well in every other aspect.
I begun to question what I had been told as I am still not comfortable with the size of the swelling which has not grown larger than that of the afternoon of the 14th but has not begun reducing as I had expected.
Uneventful weekend all 3 of us were at home for both days, Ken went out briefly on Saturday.
Monday 24th November 2008
Leaving early for weigh in as I decide to speak to Linda again. We are in the first group to be seen and I request to wait for Linda rather than see the other Health Visitor who had not had any dealing with the history of Ben’s caput. Linda sees me and looks at Ben’s head. She says I don’t think it is anything to worry about but perhaps you should get a 2nd opinion, she then asks her fellow Health Visitor who agrees that I should see my GP.
I walk around to the GP Surgery but it has closed 10mins previous and will not reopen until 4.30.
At 4.30 I ring and explain to the receptionist that although they are very busy with no appointments left I feel I need to see someone. I am told that I will have to wait and that it is not my own GP. Since I do not mind who I see I accept an emergency appointment for 6.00 that night.
After a long wait at the surgery I see a new female Dr. She doesn’t think its anything to worry about but is very honest that it is not an area she is familiar with and decides to refer us to the hospital. Her online booking system shows availability for 9 days, I ask if she thinks I should wait that long. She says yes and that had it been longer than 2 weeks she would have written us a letter for A & E. I am given a computer print out with a password and told that I have to make the booking myself.
I return home and immediately telephone the booking line. The operator is very helpful but advises that the first available date is the 17th December, much further than the 9 days I was told 15mins ago. I explain my concerns to her and am told to try again in the morning ‘ as appointments are being cancelled and updated 24 hours a day.’ I still accept the 17th date so that at least we have some one to see but I agree that I will retry the next morning.
Tuesday 25th November 2008
At 8am I log on to the booking site and attempted to make an earlier appointment. The dates shown are later than that that I have booked so I wash and dress Ben and decide to take myself to A & E at Queens Hospital, my local hospital and Ben’s place of birth. It seems pointless to sit and wait around for my GP to write a letter which I will have to wait till after clinic to collect.
At 8.45am I reach Queens hospital and I am seen by triage within 15mins, again Ben’s obs are fine. After about 10mins we are moved into a paediatric waiting area and after another 10mins moved into a side room in A & E.
A nurse comes in and redoes Ben’s observations she also asks that he is undressed for weighing. All of which seems fine.
I am introduced to a young female paediatrician who I begin to explain our situation to before I finish a second, slightly older lady enters and introduces herself as the Registrar. The Registrar examines Ben and seems warmed by his giggling and general well being. She comments similar to all of the previous that he seems very well and unaffected.
I outline several concerns to her.
1. He only likes to sleep on one side of his head and during week before the swelling I have been tucking a posseting cloth under his chin to encourage him to lay on the other side.
2. Large amount of loose skin that has remained after the initial caput swelling.
3. Very veiny forehead
4. Very lopsided skull shape
She dismisses these all as ‘not unusual baby factors,’ I mention that the only other thing I have changed within that same week period is that I have removed the infant U shaped padding from the car seat.
She asks the younger paediatrician to insert a iv and collect blood. She explains that they will do a CT scan which will require Ben to be still. I do not think sedation will be necessary as Ben will sleep quite easily if I cuddle him after his feed which is now due. She agrees that I should call her as soon as he is sleeping, the scan results will take about 1 hour but that it is procedure to book a bed for such young babies if the whole visit is likely to take longer than 4hours.
The paediatrician returns with the IV and as Ben cries I find this very distressing as both Ben and I had very bad experiences at this hospital and the IV’s remind me of the 6 attempts I had within a 30min period at the time when I was separated from him.
The IV has to be removed as his veins are too small but blood is collected whilst it is in place. I feed and comfort him straight away and as expected he sleeps. I call the registrar and Ben’s CT is done within a few minutes.
After waiting sometime we are moved up into a side room of Tropical Lagoon children’s ward. We do wait for quite some time and at around 1pm a young male Dr comes in and asks if he can see Ben’s head. Ben is sleeping in my arms and he doesn’t find a swelling of significance, I assure him it is there but depending on Ben’s position it moves around the base area of his head.
Around 1.45 Dr Solebo enters the room and closes the door, he introduces himself to me. I ask him if he has Ben’s CT results and he says, ’that is the end, we must start at the beginning’ his tone is very strong and I begin to feel worried that he is preparing himself to give me bad news. He proceeds to ask me about my pregnancy, first check ups and scan. All of this adds to my fear he is going to tell me Ben has some abnormality or disease not diagnosed previously, I said to him ’please you are scaring me what is wrong with my baby.’ It is at this point I am told that they think Ben has a fractured skull, I start to tell him that Ben had a serious head injury at birth but he leaves the room to answer his mobile telephone. When he returns I tell him that I should phone Ben’s dad, he knows I am at the hospital getting a second opinion but I haven’t spoken to him since we were moved upstairs. Dr Solebo says its not necessary at this stage and begins asking questions about drugs, alcohol and very quickly I feel aware that the view of Ben’s head has changed. I again try to tell Dr Solebo about my delivery and Ben’s traumatic birth but he leaves the room to answer his mobile telephone again. Whilst he is out of the room I see Ken walk passed the corridor, so I go out of the room and call him. By this stage I am very upset and try to explain to Ken that I feel they think Ben has a fractured skull and that they are trying to imply that we did it.
His immediate reaction is to tell me to calm down, completely sure that I am not right. We return to the room and Dr Solebo joins us both . I try to return to the conversation that has been twice interrupted which is that Ben had a serious head injury at birth. Dr Solebo advises that he has requested my notes but that it is their strong opinion that any head injury at birth would have resolved within 6 weeks, this is something that is repeated over and over again in the 9 days that follow.
I feel he does not understanding how huge Ben’s original swelling was and that it had left his skin permanently stretched on the back of his head, above his neck. He leaves the room for the third time to answer his phone and promises it will be the last call he takes.
He continues to ask us social questions regarding housing, martial status, drug use and then he directs his questions at Ken. Ken is very clear that although he works and I care for Ben he has never seen Ben with an injury and that this swelling is the same as before. When questioned on the subsidence of the original swelling Ken says about 4 weeks but that the skin on the back of Ben’s head has always remained excessive and loose it was difficult to be sure exactly when it went.
On his return Dr Solebo says that an MRI scan will need to be done and will provide the necessary information regarding the age (calcifications) and extent of possible fractured We are also told at this point that Ben will need to have a full body x-ray for other injuries and that we are being investigated for possible ‘non accidental injury’, we are told of the type of force needed to fracture a skull and it feels as if we are being pushed to say that we dropped him. I categorically denied any type of accident major or minor and again say that this is the same thing he had a birth. Dr Solebo points out that why would the swelling go if this was the case, why would it reoccur, why did I say it originally say it stayed for 3 weeks when Ken said about 4 weeks. In our very emotional state he tries to trip us up by implying that we are contradicting each other, which we aren’t its just difficult to recall an exact date that the first swelling disappeared. It is very clear that he does not believe us at all and that his mind has been made up regarding birth injury not being at all likely.
The full body x-ray is done almost immediately and although no one ever gets back to us on this we knew that there would be no findings, as Bens entire body does not have so much as a scratch on him and never has had since his injuries at birth.
I am extremely distraught and Ken is completely dumbstruck we have tried several times to continue with the birth story but the feeling of not being listened to and ostracised is immense. I leave the room to call my mum but cannot pull myself together enough to use the telephone. A lady I later come to know as a member of the admin staff on Tropical Lagoon (Gill) is the first person to show any sympathy towards us and ushers me back to the ward by offering to call my mum.
Gill comforts me in a side room and when I return to Ben’s room, Ken leaves to call his parents.
After sometime my mum and Ken’s parents arrive, although Ken and I are very upset we all feel that tomorrow’s MRI will clear us and show that Ben does not have a fractured skull.
The MRI is booked for 12.30 the following day and we are told that Ben may need to be sedated.
I stay overnight with Ben, neither of us sleep at all well, Ben seems very restless and seems to be picking up on the stressful environment.
Wednesday 26th November 2008
Ben feeds at 7am, we are not advised until 10.15 that Ben should not feed for 4 hours before the scan. I am concerned about this as this now means that Ben will have to go hungry for a long length of time (6hrs) and that we should have been told before so that we could plan his feeds better. Thinks like this happen a lot, communication is very poor.
After discussions on monitoring his glucose levels we are asked to feed him immediately, because it is early Ben will only take a small amount. The scan is rescheduled for 3pm, sedation 2pm.
At 2pm the sedation is given but Ben is restless as he is now due a feed. He dozes lightly whilst I cuddle him but wakes at the beginning of the scan, I explain for the second time that when Ben is hungry he will not settle unless he has a feed, it is the only time he really ever cries. He is given another dose of sedation drugs but still will not sleep.
At all points we remain chaperoned by nursing staff when not on the ward.
Dr Solebo enters the waiting area where we are trying to coax Ben to sleep and at this point another person is moved in front of us which we are told will take 15mins.
In the end I am allowed to feed him and he sleeps straight away.
Dr Solebo uses this opportunity to tell us of the professionals meeting which will take place tomorrow and includes a police officer, our health visitor, gp and social services. I become very, very distressed and whilst holding Ben I try again to tell him that if Ben has an injury this hospital did it ‘you are the only ones that have hurt him’ he again mentions the ‘6 weeks’ and ‘non accidental possibility’
Although I know that I was hysterical at some points I was also very clear about the injustice that was being carried out against us, I made 3 points that today pain me as much as they did then.
1). We are being presumed guilty before any injury can be established.
2). BHR are not being investigated or treated inline with me in terms of injury possibilities, I am not allowed to represent myself or defend myself in a meeting about my son whilst those who injured him sit on the board of decision makers.
3). Ken and I will have to live with the stigma of child abuse forever, Ben will always have a social services record, our GP, Health visitor as well as everyone down to the cleaning staff on the ward know our business and we know that we aren’t guilty.
I try to leave the room with Ben but Ken pulls me back in to sit down and although we are both in tears and shock Dr Solebo leaves us but not without a final comment that if we had said we had an accident we would be at home by now. This is peppered throughout our 9 days and at various low points I felt bullied into lying that I had just so that we could be together as we had already been told that Ben was not ill and needed no treatment.
40mins has now passed and the patient who was meant to be 15mins is still having their MRI, once they are finished the scan is quite quick, I hate the fact that like with the full body x-ray you can feel the way the staff look and feel about you. Only one or two out of 8 will look or speak to you, the child abuse tag circulates the staff everywhere we go.
We return to our room at 5pm, Ben is still sleeping and the ward sister suggests that Ken stays the evening as she is concerned for my health, its not the last time that ‘postnatal depression’ is aimed at me. Despite this I am grateful that they let him stay.
He leaves briefly to get us some clothes.
Almost as soon as he leaves Dr Solebo enters the room, on seeing me alone he asks for Ken to return before 6.30pm. I presume this is too discuss the MRI, I call Ken from the room as we are both desperate for the MRI results because this will clear us and either show no fracture or calcification of an old birth related injury as discussed yesterday.
As Dr Solebo leaves a student nurse enters, she says it has been confirmed Ben does have a fracture and would I like to see it, she then shows me a screen on the front desk which everyone is looking at. She points to an area but I don’t understand and I return to me room very shocked. I sit in front of Ben’s bed not believing that things could get any worse, Ken returns and I tell him what I have been shown, we think this is a CT scan. Ken has brought with him some old photographs of Ben as a newborn. At the time he was in SCBU and Ken took these to put around my bed for me so that I wasn’t alone. Without realising at the time it was taken one of them shows to some degree the extent and damage caused at birth we decide to show this to Dr Solebo in the hope that although he says he has read my notes this will force him too see that the original swelling was quite shocking and worthy of not being dismissed.
Dr Solebo returns and without us saying anything he guesses that we have been told, he takes us both back to the same screen and shows us a folder with a quote which says ‘I am suspicious of an occipital fracture’ at this point we believe Ben has a fracture (because the nurse told me so) and its not until almost 2 days later that we understand this meant ‘there could be a fracture, rather than how we read it as ‘a fracture which is suspicious’
We revert to our only other possibility which is that the MRI was going to be able to date a fracture by showing calcification if it is old. We ask why we are now going back to CT scan that gave no definite answer the day before rather than the MRI done for this purpose. Dr Solebo says he will not comment on the MRI as he is ‘not an expert’ and I feel lead up a path, I would not have objected to the MRI but it does feel that it has been done under false pretences. He says that the MRI will be read by an expert at GOSH and that this will take until Monday.
I try to show him the pictures that Ken has brought but he would not look he says that I am aware he had a swelling,. We want him to see how severe it was but he refuses.
As a couple we try to reflect positively on tomorrow’s meeting. We know that both our GP and health visitor should have positive reports as both have seen Ben a number of times and between them not one week has gone by when either one or both of them has not seen him naked and just like now he would not have a mark on him.
Several nurses enter over the next hour we are told many stories about child deaths and injuries that have occurred under the care of the hospital but that they are very shocked at how harshly we are being treated, particularly noteful is that this is because of the current press regarding Baby P. It is at this stage I am told that Dr Solebo is a paediatrician but more importantly to me on issues of my child’s welfare under a failing hospital he is the Child Protection Officer.
We try to rest and gather our thoughts but I can’t let go of the fact that we aren’t being listened to regarding Ben’s birth injury and that I am not being allowed to express this at tomorrows meeting. I know that I cannot rely on the hospital or Dr Solebo to bring this forward as he has already dismissed it. Ken and I know that we need help but despite calling our families none of them have any experience that can help us. The nurses can offer no support and in desperation I go to the reception desk at the front of the main entrance to the hospital.
Its about 10pm and I am told that the best person to make a complaint to is the Site Manager or PALS, PALS is closed and the Site Manager is called down to speak to me, I am told that she managers the entire hospital, I just want someone who will fight my corner and at least ask that birth injury is considered before a team of people who have never met us pass judgement on the evidence of someone who;
1). Won’t equally consider all the facts.
2). Has already made up his mind
3). Is in the opinion of his own staff responding to Baby P hysteria
Lisa Brown comes to meet me in reception and I explain my situation and concerns to her. She walks me back to the ward where she says she will speak to the nursing staff and collect the facts.
After speaking to the nurses Lisa comes into our room and speaks to Ken and I, she explains Dr Solebo’s role and the things that he has too do but she also says that the nursing staff believe him to be treating us very harshly because of what is going on in the press.
Its unclear how Lisa can help us but she promises to call into the Matron tomorrow even though its her day off and will be in touch the day after.
Thursday 27th November 2008
Ken called our parents in to make sure that they were here for 11am when the meeting started so that any questions that needed answering could be directed to the people who have the 2nd most amount of contact with Ben. I went to find PALS.
At PALS I speak to Barbara and highlight my concerns, I am very direct that although the last few days have been difficult I realise that we are going to need to be able to fight our corner and insist that our concerns are heard. Barbara says she will speak to Dr Solebo.
I return to our room and at around 10am Dr Solebo enters, he enquires about Ben’s welfare and I mention that he has slight dry patches which look like eczema developing on his outer elbows and outside side facing area of his knees. Dr Solebo asks his assistant to get us some aqueous cream.
He leaves but returns almost immediately with Barbara. He explains that he must gain permission from the other attendees for Barbara to attend the meeting on our behalf. He also expresses that he is just doing his job and that he is not a police officer. To this he replies that he has a job to do and says in the situation of Baby P - who is the first person to get the sack, the paediatrician. I agree with him partially but I remind him that he is the Child Protection Officer of the hospital I believe injured my son and that my son should be his first priority not his job safety. I also tell him that I feel very strongly that he is not being open to the possibility that Ben has a birth related injury, both dismissing it and at the same time telling me he is not an expert, if he is not an expert then he should not dismiss it. His only response is that he has my notes and that the reason he will not look at the photographs is because he has them, this I tell me cannot be true as the photographs are from Ken’s personal album. He is stumped and responds that he will speak to the others regarding Barbara’s attendance.
Our parents have now arrived and wait in the waiting area as it is not yet 11am, I meet one of the ward nurses in the hallway and as she directs visitors through she says ‘we are not ready for you yet’ I am surprised at this point that she does know we are not allowed into the meeting.
At around 12.30 the nurse I had seen in the hallway says ’mum can we borrow you for a minute’ I follow her out but before we reach the last door Ken catches up with us and expresses that he would like us to go in together.
Eugene O’Riorden, the police officer, came out and introduced himself, he expressed to Ken that they would prefer to speak to me alone “we’re not trying to ambush her.” Ken wasn’t happy as it had already been the hardest few days of our lives and we both had experienced the ‘postnatal depression’ comments. I knew that he felt the same us I did that this was very much being laid at my door but in this situation one of your worries is how people will interpretate things and as much as I wanted and needed his supported when facing further accusations I worried that insisting he stayed may make us look like we were hiding something so I sent him away.
The first thing that struck me when I entered the room was that they were only 3 people (Jules, Eugene and the nurse from the hallway), everyone else had already left, secondly the nurse was someone I had at that stage had no contact with yet I find out that she was there to report on our interaction with Ben.
The meeting was extremely distressing, I was advised that Ben was under Police protection and could not be removed from the hospital, he had to stay until Monday, everyone who had come into contact with Ben would have to be investigated and interviewed on tape. Particular scrutiny and emphasis was placed on the fact that I had been unwell. I became very distressed as I was talked at and told that I could not possibly know Ben had not been injured either accidentally or otherwise by people I knew.
I tried to express what I did know and fought to establish that had I have dropped him or even hurt him deliberately as being suggested why did he not have a bruise, scrap or discolouration to the damaged area, why was it exactly the same occipital area injured in my difficult occipital presentation labour. Why was it possible to suggest that Ken could have hurt him at 4 days old when I was in hospital and he still have an injury but not possible for him to have an injury from birth? Why was this a safer environment when at worst placed us in this position and at best endangered both our lives with a terrible 10 day trial of labour ending with me gaining an infection? Why when we were left alone with our son 24hrs a day in a private room, who still had no name band, was not having his observations done - what safety were you offering - to me your own job safety, Dr Solebo’s previous words remind me of the real angle of safety being considered here ‘who was the first person to get sacked, the paediatrician’
I asked Jules to confirm what had lead them to the decision to keep Ben under police protection. I was given a non direct answer regarding factors placing us at the top of a pyramid which meant the committee had no choice but to take the action they had. I asked for those factors to be confirmed since no injury had been established and everyone agreed Ben needed no medical attention why were we being prevented from leaving the hospital. I asked directly if we were a victim of Baby P hysteria. Both Jules and Eugene declined to comment any further.
Ken was brought in as Eugene felt he could not talk to me ‘in this state’
Ken was brought in and the fact that Ben had to stay here was advised to him, I think at that point we were truly broken, we were allowed to go back to room but Ken was right that we kept thinking we had hit our lowest point and then something else would happen. I was told that the person who would deal with my concerns was our Social worker and that she would be in touch by the end of the day.
Barbara (PALS) came up to see us shortly after, it was only at this point we realised that she couldn’t say anything in the meeting, her role was to see that the meeting was ‘fair’ in her opinion.
The rest of the day seems terrible, no one came in to see us or Ben, no call from Social Services. Our parents leave us alone and spend most of the day sitting in the café as its difficult for them too, they can’t help or console us but they want to stay around in case we need them.
At 4.45 I go to the nurse who was present in the meeting and ask if Social Services have called, she says that they probably won’t call now as its late but agrees that we had been told they would.
At 6pm I go and ask for the aqueous cream that was requested this morning, the nurses give us the cream but have been told to give us a wide berth, I don’t know if this is because of the complaints to the Site Manager or out of some strange sense of sympathy but either way it doesn’t seem fitting considering why we are here and raises all of my early questions and concerns regarding what and who does the purpose of us being here serve.
One thing does change, around 10pm in the evening, a duty doctor visits and Ben’s observations are done routinely for the first time. The duty doctor is the registrar from A & E.
Friday 28th November 2008
When Dr Solebo visits I tell him that Social Services have not been in touch as promised he asks the nursing staff to give them a call, the conversation moves to my fear that Ben will be taken Dr Solebo says this can happen. He again mentions accidents happen and that 2 of his own 4 children have had broken bones, if we had come in to A & E as a result of an accident we would be at home by now.
I am given Ben’s medical summary and accompanying scan letters by Dr Solebo he says he will be back for any changes within 2 hours. Ken is having tea in the parents room so I read them first. The first thing that strikes me on the letter is that instead of asking if this could be birth related, it says ‘parents have raised the possibility of this being birth related’ this too me confirms that he personally is not asking if it is birth related because he has made up his mind.
On reading the medical summary I notice words missing in sentences and a lack in my opinion of representative information regarding the level of difficulty in Ben’s birth. Two points that I write on my copy to ask Dr Solebo to change are that the ventouse was applied 3 times and that as well as the 3rd degree tear that I had which he has mentioned I want him to mention the episiotomy incision made after for the turning forceps used to attempt to rotate Ben’s OP position.
When Ken returns he also makes changes regarding the inaccuracy of the dates i.e. it says November as Ben’s DOB rather than September.
About an hour and half later Dr Solebo returns to collect the letter and when I discuss my changes with him he declines to make them. His reason is that an episotomy and 3rd degree are the same thing and that it is irrelevant how many times a ventouse cap is applied, both points I know to not be completely accurate. He then confirms that he had already sent it before passing us the approval copies.
We are both frustrated and upset again by this. It may seem small to anyone else but we are fighting the right to be in our son’s life and to add insult to injury we now have to hear that the results will not be back Monday as the GOSH experts cannot be ‘hurried along’ it may take up to 6 weeks but at least 1 week from today.
By the time the Social Worker, Angela Reid, arrives I am ready to burst and do spend most of the meeting with her in tears. Ken watches Ben while I fill her in and answer her questions. She looks at Ben’s head briefly but doesn’t feel she needs to see him naked. Angela is lovely to Ken and I, and listens to our case. It is devastating to us however that we find no matter what, Ben will not be coming home with us on Monday. It is likely he will have to move in with one of his grandparents.
I ask what if GOSH say there is no fracture as I remind her that there is still no agreement that this is the case. Angela replies that if there is no fracture Ben can go home. We give her both parents details and agree that if Ben cannot be with us either family will make themselves available to her. Angela leaves after a short time feeling that she has enough to begin working on, she has made us feel better by allowing us to express our concerns.
After about an hour Angela calls back on the bedside phone and advices that her boss feels we need legal representation. She tells us that we cannot rely on the hospital to represent Ben’s injury fairly. I call around trying to get help and in-between calls my mum rings and requests that I call Angela back as she has some news. It seems that Angela’s superiors are not in agreement and do not want Ben to go to grandparents, foster care is mentioned as is a mother and baby unit. I discuss with her that I want too be with Ben wherever possible but failing that he must go to one of our parents. My mum had not seen him for 10 days (she was on holiday (provable by tickets) which both Social Services and the police had been made aware of very early on) prior to the swelling and was not the parent looking after him during those early birth days that Eugene had seemed so concerned about I felt sure therefore that they could not link her to the injury at any reasonable point. Angela said she would continue to express this but we would not hear until Monday morning.
Ben’s observation had started to be done routinely but no one sees him at all Friday evening.
Saturday 29th November 2008
I advise the doctor on the morning ward round that Ben’s dry skin has become very scaly and that the aqueous cream is not really helping. He asks for us to be given some Oilatum. We have seen other ward doctors and are asked the usual questions regarding Ben’s head and particular do we know how it occurred feedback to our explanations of opinion is very rarely given and his occasion is no different.
At about 6.30 I speak to the nursing staff and the young male Asian doctor who I meet here on the first day I was admitted on to the ward. I tell them that Ben seems unusually unsettled and has been crying for some time. I think that his head looks a little puffy and he has an upset tummy, we are given some Calpol
At about 10pm the female registrar who is the only one to ever visit Ben in the evening returns, he is awake this time and she has a good look at him. She is always very pleasant so I ask her the same question that I have poised to Dr Solebo, if it is not a fracture what else could it be. She says it is possible that Ben’s original fluid never actually went just moved. I feel happy that at least one other person in the hospital is at least open to the fact that there could be another explanation.
Sunday 30th November 2008
Not much happened Sunday, saw the same doctor as the day before on the morning ward round.
Monday 1st December 2008
Ben has his eye test today but everything appears to be normal other than he may have a blocked tear duct which will be reviewed when he is 6 months. Our chaperone is a lovely nurse but I still hate the feeling of not being trusted with my own son, if I was going to run off I’ve had 7 days.
We have a solicitor booked for 2pm which is when the meeting is being held, as off yet we haven’t been told anything about what to expect or when and if it will include us. We both ask our parents to be here all the same as we are still surprised that the police have not yet made contact. The slowness of the process is another of those things that I find wholly unsatisfactory, your holding people’s lives in your hands and if you can ask us too understand some of it we could never take on board the lack of urgency applied to every aspect.
I call Social Services because I had been promised a call on what was happening but Angela is off sick, someone will get back too me.
On Dr Solebo’s round we ask if he has heard anything from GOSH yet, he has not and does not expect too until the end of the week.
We also see another doctor today, he doesn’t introduce himself but it is no surprise to be asked the same questions regarding how did Ben injury his head, has he had some sort of impact. I answer everything honesty and prompt for my question off if its not a fracture what do you think it could be?
He asks me questions regarding my blood and any problems I have had. I mention too him that I have a clotting disorder and severe anaemia diagnosed late (38wks) in pregnancy. These are all things that I have mentioned before and the good cop bad cop routine of the various doctors trying to get us to ‘confess’ is wearing thin with me today. He is quite brisk with us and leaves without responding to me explaining about my clotting problems.
Around 12.30 Jules calls and says that he may need Ken and I to visit Social Services regarding today’s ‘Discharge Meeting’ I get excited and hopeful that they have found something and are letting us home, even if it is to parents. Ken is more cautious and wants me to not build my hopes up, he has had too deal with how the last 7 days have affected me whilst dealing with the ordeal himself and I know he is worried but I have too hope, its all that gets me through each day.
Jules never calls back, I call there but no one takes my call. I ask today’s nurse what is going on is the meeting going ahead, are we in it? She is also unsure.
We decide to focus on the arrival of our solicitor and the points we have prepared for discussion. This includes those items that I requested were changed on the letters accompany the scans , I have also prepared notes on birth trauma, this includes research on trials of ventouse and fractures caused by rotational forceps.
On meeting our solicitor Barbara Hopkins we ran through this and our current position. I introduced Barbara into the meeting but Dr Solebo says this is a professionals meeting and that Barbara cannot attend, Barbara opposed Dr Solebo and said no this is a discharge meeting, other meting members agree that it is in fact a discharge meeting and Social Services have brought with them a foster carer. We were asked to leave Barbara‘s presence is not welcome but she is allowed to stay as she had already been in contact with Social service legal team.
After about 45 minutes Barbara came to see us, I had been so happy today but I knew just from her face that it was not good news. It seems Social Services had made a decision to send Ben and I to a foster home, we were to be monitored during the day and separated at night, there was no mention of what would happen to Ken. We were to leave that day, I refused and said I would rather go too court, I could not allow my son to sleep in the bedroom of a strange man I would rather fight my side with a jury. Barbara felt that this might not go our way but against her advice Ken and I felt we had too try, we were innocent after all.
We were then invited into the meeting.
Our distress did not control us this time and we fought our corner raising the birth questions and issues myself, highlighting that Dr Solebo had not let us amend the letter given to us for approval and that he would not let us express our concerns regarding birth problems, in a room full of people he found it harder to dismiss us.
After much persuading by Barbara Dr Solebo left to chase the pending results. When he returned he advised us that the intended recipients was on long term sick and that he had managed to get a reply from someone else (a colleague of the recipient at GOSH). The joy that hit us when he said ‘ no convincing evidence of a fracture’ had been found was amazing but short lived. Immediately after Ken and I hugged each other with tears streaming down our face Dr Solebo started to add his own comments regarding impact and that Ben had still suffered an injury.
We were horrified, all along we did not believe he had a fracture but a birth related injury and we had been told that no fracture meant we could go home. Now it was confirmed that a fracture was unlikely we were still being accused, I could not believe it and for the first time it seemed like the other table members agreed with us. This was a personal crusade, he believed we were guilty and could not see anything else. GOSH had not mentioned impact so why was he still insisting that there had been impact. In the previous 6 days we had talked through all possibilities and he had always know that there had never been any marks of trauma, bruising or grazing, he had had to admit as much several times. Now he was saying that the swelling was impact related but would not confirm whether this was blood, water, friction, he would not confirm the exact area under suspicion to our solicitor who was asking about misread skull suturing nor would he answer my questions on if he believed this swelling was from a knock on the head would it really not have reduced in 3 weeks.
I reiterated the changes I had made in the week prior to Ben’s head swelling (car seat and posseting cloth) Dr Solebo shocked me further by raising his hands and saying over and over again to everyone at the table that he had never been told this before. I am afraid we burst a little at him at this point and told him very clearly how we felt, his constant rejection of our birth story, photographs and notes of both the week before and after the swelling had first appeared, his simple refusal to listen. He agreed in front of everyone that now the scans had to be redone (with a some other scan option switched on (bone density)) at GOSH’s request so that fracture could be ruled out 100% to send information relating to the birth that he had reclined to clarify before.
We were told that rather than leave with the foster carer we could stay another 2 nights with the scans being redone first thing.
Ken takes Eugene to look at the car seat which is still in the car from the day I arrived. He asks Ken how he is feeling, Ken explains that every time we think things are improving somehow they get worse and he isn’t sure if they can get much lower. Eugene comments that although he can’t imagine how Ken is feeling he must feel better today after the meeting.
Tuesday 2nd December 2008
Ben’s scan is redone and the doctor who spoke to me before about clotting disorders visits, after he leaves Dr Solebo visits and says Ben is going to be tested for Von Willibrand, he is not expecting a positive result.
It is late afternoon that the scan are sent off so we are told to stay until tomorrow, this had been expected as a meeting was scheduled for Wednesday at 3pm.
Wednesday 3rd December 2008
I had a bad feeling all day as we saw hardly anyone, I rang Social Services and was told they have an emergency and Julie was in the hospital and would try to come and see us before the meeting. Haven’t seen a doctor since briefly this morning when Dr Solebo said he wanted us out of here, the nurses don’t know about the meeting but they know we are getting discharged. I am so scared that they are putting us in care today that I spend the whole day standing in the door way just to make sure I can see who is coming in and out. I know that I am watching for Leisa the foster lady but if I speak to anyone I will burst in to tears again and I know from Social Services that the comments about my emotions are not helping.
Every hour passes so slowly, at 3.10 no one has come or told us what is going on, my solictor is also trying to get an answer for us.
3.30 I ask the nurses to call Dr Solebo, he is out but will see us on his return, about 30 mins later I see him in the hallway where I am still waiting. About another 30 mins goes by and he sees me several times and says I’ll come and see you in a minute.
At about 4.45 I can’t wait and I ask another doctor who is in the hallway, he says Dr Solebo is getting my fax.
At about 5.15 Dr Solebo comes into our room and closes the door. He apologies for the delay but says he has lost our fax in the hospital. He does however show us a case study which relates to Ben’s condition. He apologies for the process that we have been through but it seems Ben does have a birth related injury. He tells us he got an email confirming this at 9.15 this morning. By 5.30 we are packing to go home.
Ben has a rare type of subgaleal hemorrhage and any knock can cause excessive swelling on the head right up until the time the skull fully knits together, approximately 7 years of age, but Great Ormond Street find that this is directly a result of poor and multi application of suction devices.