(7/6/2013 - 20/7/2013)
by Mandy Sahota, mother of D'Sharno
Day 1 – Friday, 7 th June 2013
At around 2300 hours I started to bleed excessively whilst in a shop in the upper Norwood area. I immediately ran towards my partner Anthony Rowe’s car calling 999 for an ambulance at the same time. Paramedics arrived by car first and I explained that I was a high-risk pregnancy as I have hypertension and had preeclampsia with my daughter. I then handed over my pregnancy notes.
An ambulance arrived shortly after and was set to take me to Kings College Hospital, then the paramedic announced that I would be going to Croydon University Hospital instead as it was 0.5 miles closer. On the journey to the hospital the paramedic inserted a cannula into my right arm.
Day 2 – Saturday, 8 th June 2013
On arrival at Croydon University Hospital, the paramedics were pressing the buzzer many times outside the labour ward and were wandering why the door was not being released. Eventually the door was opened, and I was taken into a room.
At this time one of the paramedics went to find my partner to let him know where I was. I noticed staff walking in and out of the room including a Doctor that walked in and just touched a table without saying a word to me.
At this point I was hysterical and was pleading with them to check my baby’s heartbeat as I had not felt him move since the abruption. Then finally 20 minutes later a midwife came in to insert another cannula and casually the Doctor rolled in a machine to check baby’s heartbeat.
Then they were all acting very lost and confused and I was given an injection into my left thigh, which was thrown into my leg like a dart and as it was painful I tensed up and the injection fell out.
At this point I was begging them to save my baby and was told by the Doctor that if I am going to shout he will not help me, and he went to walk out, I pleaded with him to save my baby. I was then told I would be going into theatre for an emergency caesarean section. I asked if my partner could come in with me and was told abruptly “no”.
In the theatre room I was screaming to them that I did not want to die alone, and could my partner be there just as I fell asleep. A mask was put over my face and I could see the surgeon standing there asking why I was not sedated, when suddenly I heard the words “oh fuck the gas is not on”; I was then sedated, and my partner was outside the theatre and saw them rolling out our son and whispering he is tiny as they were rolling him in an incubator to the Special Care Baby Unit.
As I woke from recovery I was panicking and shouting that I wanted to see my baby and was told he was fine and healthy as he came out screaming so I need not worry. I was still very upset and kept telling my partner that I did not trust the hospital and felt that my baby would die in their care, especially after the bad reviews they already had. I was then taken into the room I was in before theatre. All I wanted was to see my baby and to know he was ok. I was then told a picture of my son was on its way. I kept on asking for the picture of my baby and was told to wait. After a period of time a nurse from the Special Care Baby Unit came in and told me my baby was fine and weighed 3lb +. I told her that I was previously told he was 1 pound 11 ounces.
Many midwives came in to tell me different things over the next 6 hours including being told my son had the cord around his neck 3 times, he was breathing on his own, and came out screaming. I overheard the midwives at their station complaining about me every time I pressed the buzzer until a midwife came in and screamed at me that I cannot see my son for 2-3 days.
I was not satisfied and asked for assistance to clean myself and a member of staff came in and got me some water and I proceeded to wash myself. I was then assisted on to the chair while my bed sheets were changed. By this time my partner had arrived back and I buzzed for a midwife that I was going to see my son and after many attempts she got us a wheelchair.
I finally got to see my son who in fact was 1 pound 11 ounces / 760 grams. He was perfect and was breathing all by himself and there were no health issues they were concerned about, as he was a very strong baby.
Back on the labour ward my friend had turned up to offer her support. She had driven all the way from Leicester as she heard how upset I was on the phone earlier. I then told the midwife I was going to see my son again as I had a syringe of colostrum for him. I walked to the baby unit as the wheelchair had been taken by that time.
Day 3 – Sunday, 9 th June 2013
I was sent to Mary Ward into a shared room with a mother and her baby. I found it rather distressing hearing the mother opposite bond with her child and went to see our son D’Sharno again with my partner. When I got back to the ward I was told off for not staying on the ward. I explained my concerns and was told to rest as my blood pressure was high. We visited D’Sharno again just after 1am and was told by the nurse he is a very strong boy and that we were both lucky to be here as it was a very serious scenario.
Day 4 – Monday, 10 th June 2013
I had various bites over my body and persistent diarrhoea which I relayed to nurses, midwives and doctors on many occasions.
We also went to see D’Sharno and I mentioned that he looked pale and they said he may be slightly jaundice.
Day 5 – Tuesday, 11 th June 2013
Today D’Sharno had his first feed at 1033 hours and I asked why they were not using my colostrum as I had given them some on three occasions. The nurses reply was that we need to see how he tolerates milk and the colostrum was most probably in the freezer. I also mentioned he was less active than before and looked very pale.
Day 6 – Wednesday, 12 th June 2013
D’Sharno was starting to look even more pale and I was told they had taken some blood and were waiting for the results. Later that day we were told he needed a blood transfusion as his haemoglobin was showing a rise in white blood cells. I was told this was very normal for small babies, as they lose blood due to blood tests and find it hard to build them back quick enough.
I went to see D’Sharno in the night and asked if I could express milk next to him to help with my flow. At this point D’Sharno was constantly crying and I asked the nurse if I could hold him and she told me he does not like people touching him and that I was keeping him up. I told the nurse that he was a night baby as he was only ever active in my womb at night. I left feeling so out of control over my own child. The nurse kept pressuring us to go and I had nothing to worry about
as he was fine.
Day 7 – Thursday, 13 th June 2013
I was told I need to be discharged today or tomorrow, so I asked about facilities for parents that live further away and was told there is no such thing and that I should go home. I contacted PALS and explained that I was being told to go home without my baby and was expected to travel back each day with my 2 and half year-old daughter, even though I had a caesarean section. It seemed it was not of any concern.
I was then told that they would not write me a letter to get me a council place to which I replied that I own my home with my partner in Kent, feeling so badly judged. They still refused to believe me and even questioned me as to why I had my baby in this borough. I then could not stay in the shared room all day and only came back when it was time for my medication.
D’Sharno was put on Vapotherm today to help with his breathing but was struggling with feeds. He no longer looked so pale and was told this was due to the blood transfusion. We were told we could change his nappy, so my partner went to change him and noticed his tummy looked bigger. The nurse told him that this was due to the Vapotherm machine pushing air into him and every so often they will use a syringe to aspirate air.
I went back to the ward late and found a crib next to my bed with my belongings on the bottom shelf. I was furious and asked for the crib to be removed.
Day 8 – Friday, 14 th June 2013
I was under strict instructions not to leave the ward to go and see D’Sharno as they will be discharging me. I told them I heard of a place called the Jeffrey Collard Suite and could I use that. A nurse/midwife came in and told me that they got me a room in that suite. This all changed a few hours later and I was told I needed to go home.
I was found in tears by the Chaplain outside the Special Care Unit and she came in and prayed for D’Sharno. I went back to PALS just before closing and told them they want me to leave my baby and go home they told me they would contact the ward.
Day 9 – Saturday, 15 th June 2013
D’Sharno was very loud and active during the night and a nurse stated he was the smallest but loudest, this was usual for his behaviour at night when he is not ill. I could see him getting more active which to me was a sign he is well. The nurses seemed upset at him for being so loud at night, so I kept visiting during the night. I felt they were far too relaxed on the night shift and that’s when D’Sharno needed his mother more, but once again I was told to go to bed as he did not want me fussing with him. Anthony protested and told the nurse that I could settle him and told me to ignore the staff and settle him. I managed to settle him using a comfort hold I had read about, and he went to sleep, we then left.
Day 10 – Sunday, 16 th June 2013
Darshay, our daughter, came back from Leicester today and my brother brought her to the ward. I once again complained about my diarrhoea and it seemed to be with everything I eat, I was finally given a sample bottle. When I came to do the sample there was fresh blood in my stools and the midwives did not seem to be concerned and told me it was nothing to worry about and it was not contagious. I had high blood pressure and was told I would not be discharged, which
was not meant to be till Monday, agreed by the Ward Manager after she also saw me crying in the corridor on Friday. I also showed the nurse my wound as it was not healing correctly on one side and she gave it a quick wipe and told me it was fine.
D’Sharno seemed less active tonight so I told the nurse who told me he was just tired.
Day 11 – Monday, 17 th June 2013
Today, being discharged and was told that I must go home, told them I would in that case stay in the triage room as under no circumstances would I leave without son. Midwives came in and out telling me I have no choice but to go home, I kept on protesting. Then a lady claiming to be in charge shouted at me that I was blocking up their beds and I had to go home.
I was in a constant panic, I felt bullied, judged and intimidated when all I was doing was being a mother who had just given birth to a pre-term baby. Then later a lady came to see me that was a psychiatrist, she immediately assessed the situation and stated that I was as sane as herself and the midwife that was present.
Later I was discharged and was allowed to put my belongings in a room where staff were eating lunch. I was doing Darshay’s hair when the midwife present earlier wanted to be assured that I was not ever treated unfairly by her and how she is in awe of me for being a tube driver.
I had made plans to stay in the triage area overnight when suddenly I was offered a room for only myself in the Jeffrey Collard Suite.
D’Sharno was starting back on his feeds today and again I raised my concerns and was told although his tummy was big it was nothing to worry about. I mentioned again for them to use my colostrum as I believed that was the reason before why he did not tolerate his feeds. The nurse said she cannot now as he was about to be fed and it would take too long to defrost.
Day 12 – Tuesday, 18 th June 2013
We both finally got to hold D’Sharno today and were shown how to do his care. His oxygen was reduced, and his milk was increased.
Day 13 – Wednesday, 19 th June 2013
Today I gave D’Sharno a clean and he seemed content, but his tummy looked bigger. Later he was given an X-ray of his tummy to check all is ok and his Vapotherm was reduced to 5.0.
I felt that he looked pale again and told the nurse, only to be told it was nothing to worry about, he was fine, and I should rest.
Day 14 – Thursday, 20 th June 2013
I had a rest this morning after dropping off Darshay and received a call that D’Sharno needed another blood transfusion. I went to see him and was told he was doing fine, and this was all very normal for a baby of his size. His X-ray looked fine, but they were stopping his feeds for now.
Day 15 – Friday, 21 st June 2013
Shocked to find that D’Sharno was now back on feeds again and pleaded with the doctors and nurses to not feed him yet, or if they must to use my colostrum. I was again ignored and told to go and have a rest, I told them I will only rest when my son is no longer in need of an incubator.
Day 16 – Saturday, 22 nd June 2013
I was told that D’Sharno was doing well with feeds. I saw him a few times with Darshay as Anthony was back at work.
I noticed the paleness coming back again and brought it to the attention of all the nurses.
Day 17 – Sunday, 23 rd June 2013
Darshay helped me clean D’Sharno today and he seemed less active and pale, tummy was big but not as bad as usual, I informed the nurses and doctors.
Day 18 – Monday, 24 th June 2013
D’Sharno is looking even more pale today, he never reacted much to me cleaning him. I was told he is now on 0.5ml an hour of my milk, I told the nurse my fears and she replied that he was tired due to being fed and was not looking pale in her eyes and that I was being over anxious, and I should rest.
Day 19 – Tuesday, 25 th June 2013
D’Sharno’s milk has gone up to 1ml every hour. I raised my concerns as today he looked even worse. I was told he slept through the night which also concerns me as to me this is a sign he is getting poorly. His skin is the palest I have ever seen it and he has lost weight, the doctors, consultants and nurses all seem to think he is fine.
Day 20 – Wednesday, 26 th June 2013
Called Special Care to let them know I was running 15 minutes late after dropping off Darshay and could they wait for me to do his care. The person that answered the phone said they would pass the message on and when I asked how he was last night I was told he was doing well so not to rush.
I felt maybe I was being paranoid and as the person on the phone said he was fine was not too worried.
I got to D’Sharno at 1015hrs and was told that I should not do his care because he was desaturating all night. I soon realised what that meant as he stopped breathing in front of me. The nurse moved him up and kept saying come on baby. I was questioning her as to what just happened, and she told me he was holding his breath.
I rang Anthony who was just booking on for work and told him that something did not seem right, and I thought he had stopped breathing, so I went back in to monitor him. He had 4 more bouts of stopping breathing and I could see the nurse panicking and asking others to go and get the doctor urgently. She came and put in a line to start him on antibiotics.
At this time, I asked the doctor that if he stopped breathing again would the Vapotherm keep him breathing? She told me “no”, if that was to happen he would need an oxygen tube down his throat, to which I replied asking if she could just give him that now just in case.
I stood next to his incubator watching him and his sats when suddenly, he looked towards me and he started to foam at the mouth and his eyes moving in all directions he was trying to get a breath. I went to call the nurse, but no nurse was in the room, so I shouted for help and she ran in and massaged his chest and he was breathing again.
I went to ring Anthony but felt I should go back and noticed a nurse say, “what the hell”, whilst she is looking towards D’Sharno and there was a lot of people around him at the time as he was being resuscitated. I was then led away by a nurse who told me he is very poorly.
The consultant then took me into the office and told me he believed that D’Sharno had some sort of infection and that he was optimistic he would make it. I told him that I saw all these signs, and no one listened and now I may risk losing him because I was seen as too annoying to the staff and overly concerned.
Anthony was on his way to the hospital and came straight in to see him and they had only just put an oxygen tube down his throat and he was still trying to catch his breath when a nurse eventually realised that the valve to the tube was not turned on correctly and this managed to settle him.
All day I was worried about him and was told he is very very sick, and he was on antibiotics as they believed he had an infection and his CPR was rising which would state that he did have an infection and that his tummy was very large, and they were waiting for results.
Through the night I wanted to stay closer to D’Sharno and told the nurse I would be in the parents’ room if I was needed. The nurse left the unit unattended and went into the office to liaise with other staff. At this point we noticed an issue with his heart rate and I called to the nurse. She told me not to worry about the readings on the monitor. She then changed the subject and told me that I could not stay in the parents’ room as it was normally locked at night.
Day 21 – Thursday, 27 th June 2013
Today we went to see D’Sharno and were told that he is very sick, and they were waiting for a consultant from St George’s Hospital to call them. I spoke to the doctor and told her that I was very concerned and do not know why this was not noticed earlier and has she seen this type of thing before and have babies recovered from this. She replied yes and turned to the nurse and did the holy trinity hand gesture.
I felt I was being kept in the dark and I was annoying them with all my questions. We were then told that he is being transferred to St George’s Hospital by ambulance and they were more concerned of me getting my belongings out of the room than anything else.
We managed to load all our belongings in the car and went back and watched while the paramedics and staff transferred D’Sharno into the incubator. I was told abruptly by the Croydon staff that I could not travel with him as it is a specialist ambulance, the paramedic then asked me if I would like to travel with him to which I was pleased.
The ambulance took us to St George’s Hospital using its sirens and when we got there I was told to wait in the parents’ room. The receptionist approached me and asked if I wanted to stay on the grounds as I lived in Kent, I was given a room on the ward and was told I would be on the waiting list for family accommodation in Ronald Macdonald House.
That night we were told that he had an infection and as the culture had not grown they were treating him with 4 antibiotics as a precaution.
Day 22 – Friday, 28 th June 2013
I was told that they suspected D’Sharno has necrotising enterocolitis (NEC) and he may need an operation at some point on his bowls or tummy. He had inflated, and his tummy was shiny and looked grey and we were told that his tummy was very sore internally and he may have damaged some tissues of the lining.
I kept telling nurses, doctors and consultants that I felt he was fed too early and could they please in future take my word that my instincts have been proven and I know what my son should look like. We were also told that he is not out of the woods yet but is stable and they would know more once the culture had grown from his blood result.
Day 23 – Saturday, 29 th June 2013
We saw D’Sharno this morning and were told he is fighting the infection and they still did not know what he had as the culture had not grown. His swelling looked like it was going down a little and he was going in the right direction for recovery. We were also told that as a precautionary measure they will be holding off his feeds for 10-14 days, this gave us both faith in them as we felt they had listened to our fears about his feeding.
I went away feeling better and thought to express some milk as through the drama of this my milk supply had dramatically slowed down. Whilst I was expressing in the milk room I was rudely interrupted by the sister in charge telling me rather abruptly that D’Sharno is fine. He does not have NEC, will start feeds again, and will be sent back to Croydon.
I told the lady that Croydon was not my local hospital and she replied well the one near you then. She asked if, I could go home as I no longer need that room and a mother who will be going home needs that room to bond with her baby and then she left. I went back to our room distraught and told Anthony, who stated they could not force me to leave and that I should avoid the sister in charge for today.
That evening I went to Accident and Emergency to see if they could give me some antibiotics from the prescription I had received from Croydon for my infection, the nurse dispensed them to me.
We went back to the car and as Darshay was sleeping we sat in the car and spoke of D’Sharno and how we both believed it was too early for him to start feeding as this was the same mistake they had made in Croydon.
Day 24 – Sunday, 30 th June 2013
We all went back to the ward at about 0230 hours and were stopped at the door by the night sister in charge who had a go at me for coming in so late and told me D’Sharno is ok. After putting my daughter to sleep I went to see D’Sharno and he was starting to look like himself and I was told he still needed oxygen but as he was on a particular medication it would be fatal for him to go on Vapotherm and they would start feeding him later that day.
Day 25 – Monday, 1 st July 2013
We saw a surgeon today that told us D’Sharno was fine and needed no operation, we raised our concerns regarding his feeds and were told as the culture did not grow it was very unlikely he had NEC. I then asked them what the name of the infection was and was told they simply do not know and as he looked well that was what they were going on. So, his future treatment plan would not be as if he had NEC, this worried us both, but we had no choice but to hope they knew what they were doing.
Day 26 – Tuesday, 2 nd July 2013
D’Sharno was having his feeds upped and again we raised our concerns, we were told by a nurse that the reason his milk was increased is that he needs to be tolerating his feeds up to a certain amount which I believe was 5 or 6 mls before they could transfer him to my local hospital.
Day 27 – Wednesday, 3 rd July 2013
D’Sharno looked a lot better and I could see him coming back to his old self. I was still not happy with his feeds and raised my concerns.
Darshay had a fever owing to her back teeth so to be safe I could not visit D’Sharno until the middle of the night as Anthony was back at work. I called throughout the afternoon and evening and was told he is tolerating his feeds and they were being increased every 8 hours. That night he seemed ok and some of his lines were taken out and he looked better.
Day 28 – Thursday, 4 th July 2013
This morning D’Sharno seemed fine and I was told he was tolerating his feeds well. Through the night I was told he would be going into high dependency as he was doing very well. Again I felt he was being pushed too soon and raised my concerns. He was then moved to high dependency as we were told he is well enough and another baby that was poorly needed intensive care more than him.
Day 29 – Friday, 5 th July 2013
Only got to see D’Sharno for an hour today as Anthony was at work and Darshay our daughter still had a fever. We were told his feeds will keep going up as the quicker he puts on weight he could be moved to my local hospital, again I expressed I was not happy with their decision.
Day 30 – Saturday, 6 th July 2013
My brother and niece came to take Darshay to Leicester to give us a break as I had not stopped since the day D’Sharno was born. We visited him in high dependency and he seemed a little lethargic. The nurse asked me where my local hospital was, and she told me that they were going to send D’Sharno back to Croydon, but she recalled me stating my address on the Croydon files was one that Anthony and myself lived at fifteen years ago. Our address was changed, and I was reassured he was fine, so I took the opportunity to rest for a few hours after my brother had left with my daughter.
Day 31 – Sunday, 7 th July 2013
I went to see him in high dependency and was told he was moved to Special Care Baby Unit. When we saw him, he seemed to be a little active and the male nurse told us they would be increasing his feeds again.
As we were talking to D’Sharno I overheard the male nurse discussing our son with the same sister who previously told me to go home. He mentioned baby Sahota to her as it was his first night in the unit he will be keeping an eye on him and the sister spoke loudly saying baby Sahota is fine, he will be going to Farnborough Hospital PRUH, so not to worry about him.
I was shocked and felt she had a personal issue with my son and we kept on talking to D’Sharno. We felt in two minds over their decision. It would be great if he was closer to home but on the other hand felt it was all about bed space and he was being pushed out too early.
Day 32 – Monday, 8 th July 2013
I was told that my local hospital did not have space for D’Sharno and that they would keep trying with them on a daily basis. I queried his feeds and was told that although he should be on a certain amount of milk he is on more than he should be as he was losing weight and their main aim was to fatten him up. I also noticed that he was starting to look pale and he was a lot less active and once again was told it was nothing to worry about, but they would raise my concerns
with the doctor.
Day 33 – Tuesday, 9 th July 2013
This morning he looked paler and I was told he was desaturating and having some apnoea. I was waiting my turn when the doctors/consultants do their rounds. I was looking through the glass in the door and noticed them around D’Sharno. A trainee in the unit saw me and told me I could now enter the unit. As I approached the consultant he looked suspicious and stopped speaking to his colleagues and asked me if I could wait outside for 10 minutes, as he was just going through
D’Sharno’s history. To which I replied that he came from me and that’s his history.
To prevent any argument, I left the room, and in the waiting area asked all the mothers if they were asked the same to which they all replied no. At this point I felt things were being kept from me and I had always told them I want all information regarding my son whether it be good or bad.
I was allowed in after 10 minutes and told the consultant that I was very worried about his apnoea and paleness of his skin and could they not just give him a transfusion so if he did have an infection he could at least try to fight it rather than just leaving him. I was told they don’t like to just give a blood transfusion as it could make his bone marrow lazy. I also mentioned that this is how it all began in Croydon and I think he may have an infection, and could they not give him
antibiotics as a precautionary measure and was told he is fine and the reason he was probably pale was down to a bit of jaundice from is previous infection.
After this meeting I felt they were not taking my son seriously and were more concerned with moving him to my local hospital.
That night I held him, and he seemed to not even acknowledge me, and he was making a purring sound and I even told the nurse that he sounds like a cat, this still did not raise any alarms for them. I was told by the nurse they will let the doctors know of my issues regarding his apnoea. I also noticed that under the cap of his feeding tube there was brown stale milk on it and asked how often they change the tubes, I wiped it clean with sterile water and was told it is changed
Day 34 – Wednesday, 10 th July 2013
This morning I called the unit to check how he was doing and was told he is still having apnoea and on one occasion needed oxygen, I asked again why they was not acting on this and was told they would relay the message. The nurse also mentioned that his milk was running low and could I express some more.
I went to the unit and was told he had been settled and quiet. I told the nurse that this was very concerning for me as that meant he was unwell, and she told me doctors were looking into it as his saturation was still dropping at times.
I tried to do as much milk as I could and asked the nurse how many hours of milk she had and was told 6 hours’ worth. I also checked his feeding tube which once again was dirty, so I cleaned it before I left. I told her that I had milk in the freezer at Croydon and I would travel there to collect it.
I made my way to Croydon by bus and was told I had up to 15 bottles of milk, I was advised to only take one as it was a hot day and they did not want me to take the risk of it thawing out. I arrived back to the unit about 2-3 hours later and gave the milk to the nurse. I asked how he had been and was told he was desaturating more, and he had been having a few vomits, I told her he looked very pale and was not active at all and could she please let the doctor know.
I then went to meet Anthony after work, so we could collect the rest of my milk from Croydon. I spent hours telling Anthony how concerned I was, and I felt he would not make it if they did not act soon as this is how his previous infections had started.
I returned with the rest of my milk and saw he was sleeping again another unusual thing for him and I told the nurse to let me know if he gets any worse and to please get the doctors to check him over or give him a transfusion and then I left.
Day 35 – Thursday, 11 th July 2013
This morning when I rang the unit to see how D’Sharno was, the nurse caring for him told me that he had to have oxygen on a few occasions as his saturation levels had dropped so low and told me the doctors were aware. I was due to meet with my social worker who had been involved as a precautionary measure as I had post-natal depression with my daughter Darshay as I would not leave her with anyone. She came in to see D’Sharno with me and the consultants were doing
their rounds. I mentioned to him again that he looks very unwell and can they check his CPR to see if he had an infection and was told he was fine and they were not too worried about the apnoea as it was very normal and he would grow out of it and the only concern he had with D’Sharno was the fact he had been losing weight and not putting any on.
I later returned that evening and noticed he looked even worse and I was told the doctors are aware of his health concerns and when I asked what had been done, I was told they had taken a blood gas from him.
The nurse asked if I wanted to hold him and I jumped at the chance and asked if I could do kangaroo care. I held him in skin to skin position and he did not open his eyes the 2+ hours I was holding him, he also projectile vomited on me and the nurse helped clean it off me.
I told the nurse could they please do something for him and she told me the doctors were aware and were waiting for test results for his blood count and they were aware his haemoglobin was low on the blood gas.
Day 36 – Friday, 12 th July 2013
I received a call from the unit this morning telling me that D’Sharno would be transferred to Princess Royal University Hospital and the ambulance was on its way.
Anthony and I made our way to the unit and waited for the paramedics. Once they arrived they took all the information needed and transferred him into the ambulance incubator. They then ran some tests and were not happy with his sugar levels and were running more blood gas tests. The paramedic was monitoring him closely and noticed his saturation levels were low. They managed to get his sugar levels up but the paramedic like myself did not think he was well enough.
The staff were telling her that he was active just before they came and that he was fine, and it was nothing to worry about. The paramedic called my local hospital and asked me if I thought he was fine. I told her no, I know he needs a blood transfusion and did not know why they had not done it already. I also told her that I think he may have an infection or the previous one had not been cleared. She stated that she herself did not want to take the risk of travelling with him and
he may have to be resuscitated.
The nurses and sisters were still trying to push them into taking him and the paramedic told me she would go by my opinion and that even the doctors at my local hospital did not want to take him as that hospital has a lower level unit and would not have the facilities to assist him should he get worse.
After the paramedics left, the sister saw Anthony and me outside the hospital grounds and she told us that as we left he was very active and there was nothing wrong with him. When we went back to see him we were told he was very active when we had all left and they would transfer him on Monday.
The nurse told us we could do his care if we wanted so Anthony gave him a clean and also commented on how non-responsive he was. I told them that I did not think he was well and when I looked at him he did not seem active and had not been active for a few days now. The staff kept laughing it off and told me he was fine, and I should go and get some sleep he will be fine.
Day 37 – Saturday, 13 th July 2013
Just before 0300 hrs I told Anthony I had a funny feeling regarding D’Sharno and felt I should do my milk in the unit to be close to him. I got to the unit and D’Sharno looked very pale and limp not active like they told me earlier over the phone. His desaturation was dangerously low, and I was told the doctors had been beeped, I told the nurse I will be next door expressing milk and to call me once the doctors arrived.
I expressed for about an hour and went to hand my milk to the nurse and to see how D’Sharno was doing and what the doctors had to say. The nurse looked worried and the lid of his incubator was taken off, other nurses were asking if she was ok. She stated that he is vomiting, and she is ok and needs to change his sheets as they were covered in vomit. He then started to convulse, and I moved his head to the side and the nurse flipped him on his back and was fiddling with the monitor on his foot. I noticed his foot looked blue and she was trying to put the monitor on his other foot.
At that point I was asking her what was wrong with him and what the hell she was doing as he was chocking and eventually his heart stopped. I ran to get the phone number of the room we were in, to call Anthony and told him to get there quickly. At that time the nurse was on the phone hesitating and I shouted for her to get the crash team. She seemed to be of no use at that point.
The sister and many other staff were rushing in to assist. I then saw a member of staff pick up D’Sharno’s body with one hand and his entire body was just limp. He was put back down and they all stood back just staring at him and I was screaming at them asking them, why they were not doing anything. All I could do for the next few minutes was pray. Then a doctor came in and put a tube down his throat and I saw lots of milk spilling out of his mouth, at that point I saw his
heart rate come back and was told he is fine by the sister.
I then went to meet Anthony in the corridor and told him they managed to get him back and we will wait for them to bring him into the Neonatal Unit. D’Sharno was being transferred in a very strange looking incubator and was on a type of machine that was throwing him up in the air and back down again, the sister was telling me not to worry he will be fine and as they were at the entrance of the Neonatal Unit I crouched down to his level in the incubator and his eyes were wide open not blinking and at that point I said to Anthony he is gone his soul has just left.
We then followed him into intensive care and were told to go away for half an hour. Once we returned he was in an incubator with various lines inserted and we were told that he will most probably have an infection as he swallowed so much milk and they believe his lungs had collapsed.
We were sitting in intensive care watching while the doctors and nurses did various things to him, at that point the sister approached us to say that I hope you don’t take this the wrong way, but your flies are open, very loudly and started laughing in a flirty manner towards Anthony and other staff also chuckled.
The doctor came to us and I called him an angel as he had brought back my son and he said I am sorry, but I am not like an angel and told us that a very large amount of milk had gone into his lungs. I asked if he had seen this before and had babies recovered he replied yes but to be aware that he will definitely have an infection due to this.
I queried with him about the apnoea and why no one had acted sooner to prevent this and he told me that he thought D’Sharno was fine and as he is generally pale of appearance he did not detect his paleness. I shot back in anger saying who on earth had told him that and did me and Anthony look pale.
At that point another nurse told me she checked over D’Sharno earlier and he was playing around and that this was not usual for him. From then I started to see the lies coming out, because when I saw him earlier and even the day before he hardly moved.
We left, and Anthony went back to the room and I decided to go back to see what they were doing. I was swiftly ushered out and told to go and sleep, that he is fine and stable. Later that evening we were told he is showing signs of an infection and he was on antibiotics which was all to be expected as he had collapsed 1 1/2 lungs.
Day 38 – Sunday, 14 th July 2013
D’Sharno had tripled in size and his arms were held up in a boxing position and his body seemed stiff. We were told in a very scripted manner by many nurses that it was confirmed that he had an infection from the fluid on his lungs, they also told us that the fluid on his lungs was slowly easing but it was still an issue as he was on 100% oxygen, but otherwise he was stable.
I kept on questioning whether he had an infection previously and was abruptly told on many occasions that these symptoms were due to the fluid on his lungs. We questioned why his eyes were wide open and not blinking and were told sometimes babies sleep with their eyes open and they were putting in drops to keep them moist.
He was also on a machine that was vibrating his body and I was told this was to help him breath as the oxygen alone was not enough and this was normal practice. I kept asking if they believed he could recover and was told that he would get worse before he gets better but again not to worry that he will be fine.
Day 39 – Monday, 15 th July 2013
I called the unit to see how D’Sharno was doing and was told he was stable and asked when I would be coming in as the doctor would like a word. Anthony and I made our way to the unit and were told that D’Sharno was on the strongest set of antibiotics as they now believed that he had a previous infection as his recovery was not the same as it would be if he had just collapsed his lungs.
I asked what this infection was and was told he had sepsis, I told the doctor that if they only listened to me we would not be here and how on earth did they allow this infection to turn into septicaemia. At that moment I was distraught. My whole world came crashing down.
We were asked if we would like him baptised and the sister arranged for D’Sharno to have an emergency baptism. We were then taken into a room and told that the main concern they had for D’Sharno was his brain because of the amount of time his heart had stopped. The doctor then showed us a scan of D’Sharno’s brain and explained its structure and told us by the looks of it he may have some brain damage that will not give him a good quality of life and he has also been
having seizures that worry him and he would not be doing any more brain scans. He then proceeded in saying that he is not asking me to make a decision and is just telling me of the situation. I asked him how accurate the scan was, and could he not have an MRI scan. He replied telling me it could not be done as moving him would kill him. He also stated that they thought he may have meningitis but once again as it was a test to take the fluid from his spin. He told us that it would kill him so they were not bothering.
His kidneys were not allowing him to release fluids and urinate but the blood flow to them was fine and that was not his major concern as was the brain. He then asked Anthony how he felt about this and he looked to me and said I am just worried about you Mandy. You already do too much, and this would be so unfair on you and the doctor cut him off and said its D’Sharno’s quality of life he was concerned about and not mine. I then looked to Anthony and told him that I brought him into this world and if he does not want to bring him up he does not have to. I told the doctor that there are facilities for disabled children and I would give up my job if I had to and as he was not sure of the extent of the damage maybe one day he could even notice me as his mother and put his arms around me was enough.
I then told the doctor how could they have allowed this to happen to him and not seen the signs that I did and how all they were concerned about was bed space as a day before he choked on his vomit on the 12th of July they were ready to send him off to my local hospital. We were also told that from Monday a matron was extensively going through his notes for the issues that I had raised regarding his paleness five days before he choked. I told the doctor not to worry about that
and to give me my child disabled or not. I then left the room absolutely distraught.
We later returned and were told by the nurse he was stable but was given drugs to help his kidneys start to function and also drugs to control his seizures. He needed to urinate soon as all the fluid was retained in his body and that was the reason he was rock solid.
Day 40 – Tuesday, 16 th July 2013
Rang to see how D’Sharno was doing and was told he was the same and stable. We came to see him and were taken into a room to discuss the situation. We were then told they would be conducting another brain scan to see the extent of damage and could still not stop the seizures.
His EEG was abnormal too and as he had so much fluid retained in his body. That fluid had got into his brain and I asked if he had a wee could that fluid also drain from his brain he replied yes.
He said they would give him a higher dose of the medicine to make him urinate alongside a higher dose of medicine to stop the seizures. I asked him if D’Sharno was in a coma or on a life support machine and was told no he is not.
Our friend Audrey came to see him and later Nadine and Louise. Nadine arrived first and we went to the unit she asked them what all the medicines he was on were for. He was on a continuous line of adrenaline, medication to raise his blood pressure as it was too low, antibiotics for the infection, a line to make him urinate, morphine to sedate him and for pain relief, and sugar food substance. He also had 2 blood transfusions and 2 platelets to thicken his blood. This was later also relayed to Louise.
We asked if he could hear us and the nurse said yes, and we told her that every time we spoke to him he would move his arms more and the EEG monitor would react. After our friends had left, Anthony and myself visited D’Sharno and I looked on top of his incubator and saw the tray that is used for syringes and medicine with the name Barney Constable, one of the other babies. I questioned this with the nurse and the sister quickly moved it and the nurse told us that they clean them all before use. I felt this could have been another babies medicine given to D’Sharno.
Then later on we saw the nurse and sister getting syringes ready for D’Sharno and the sister then dealt with another baby. The nurse then washed her hands and put on an apron to administer his drugs then the sister came along with her unwashed hands and put her hands in his incubator. I immediately raised my concerns and told the nurse to tell her never to touch him again and the sister left the room.
We left and through the night I kept ringing for updates as I just could not sleep.
Day 41 – Wednesday, 17 th July 2013
At 6am in the morning I went alone to see D’Sharno and looked at his face and was horrified by what I saw, he looked nothing like my son and resembled a corpse. I sobbed on his incubator for 2 hours and even fell asleep on it. I wanted to hold him and do all the things I should do as a mother. My heart was torn.
My friend Candy came to see D’Sharno and we were told he had urinated a tiny amount and that was a good sign, but he needed to do a lot more. She asked if I was still expressing and told me to do some. I asked the nurse for the pump pack. After expressing we went back to see D’Sharno and were approached by the doctor. He told us that he did another brain scan and he was more assured now that he would be brain damaged, but he still could not tell me to what extent. I
mentioned he is starting to urinate, and would it help if he did more. He replied that he would still have some sort of damage to the brain and could cause him to have learning difficulties. I then asked him to be completely honest with me and has he ever seen this before and have they recovered. He told me yes, but all babies are different. So, we left the meeting on the understanding that he still had a chance even if he had brain damage.
Anthony later visited the unit with his cousin Leon and his partner Latanya. Later that night Anthony and myself went to the unit and as we entered the room there were many people around D’Sharno. We washed our hands when a doctor/consultant shouted oh I give up, I cannot do this.
I asked the nurse what was going on and she told us there was a problem with his arterial line. The lady doctor/consultant turned to me and said his arterial line had air in it and they could not take any blood. I asked what are the side effects of this happening and she hesitated and told me there will be none mum because I am going to fix this. The nurse then asked if we could kindly wait in the parents’ room. I told her that we would like to stay and would stand out of their way.
The doctor/consultant approached us and told us his arterial line is no longer any good, but they would try for a new one tomorrow. We were told it was preventing blood getting to his foot and all was ok. He had also had blood transfusions and platelets again today, but his urine output was better. At this point I felt suspicious and asked why his blood pressure was so low when he was on a line for constant adrenaline. Would that not make his blood pressure higher as he had a strong heartbeat due to the adrenaline? The doctor ignored my question and referred to his brain and said he had consulted the rest of his team and shown them the brain scan to see what they would do. Three of them agreed with him, saying it was not worth it and one had some hope and told him to see how it goes. So, he would be doing a more advanced 12 prong EEG test just to be sure with my son’s brain.
He then told us that I should be wise with my decision for D’Sharno’s quality of life. If they stopped treating him and his heart carried on and they would save him, then it would be all on me. To which I replied, that means he wants to be here and that would be enough for me.
Day 42 – Thursday, 18 th July 2013
Candy came to see us again and we were told his oxygen requirement had dropped and he was urinating more. The nurse then said that the doctors ran tests and believe that he is showing some brain activity when spoken to. I felt a big sigh of relief just as I thought there was no hope and he was still fighting. The doctor then came to speak to us. All three of us went into the room and I was told that another scan now confirms his beliefs that he is brain damaged. To which I replied, that’s fine I am happy to have a brain damaged child and am just glad he is at least urinating. We were all saddened by this news but were happy he was not dead. The doctor then told us that he is septic and that is why he is brain damaged and that is what happens when you turn septic.
My mum, dad and brother brought my daughter back from Leicester and all visited him under the impression that he was not going to die, that he would be brain dead. His potassium was also at a dangerous level and that was another concern they now had. Throughout the week I asked for his CPR results but never got them, so I asked again today, and the nurse checked and told me he has not had one and the last one was from Monday. This confused me further if the
infection was getting worse throughout the week why were they not checking it.
At this point I was starting to get suspicious as to what was really wrong with him because they had given me so many different versions of what had caused this throughout the week.
Day 43 – Friday, 19 th July 2013
We got a call to see if we would be coming in today and got ready and went over. We were all taken into a room and introduced to a new doctor that would be working over the weekend who I had never met. We were told that they had come to a decision to withdraw all medication and I had no choice in the matter. The new doctor then told me a story of her having to make a decision about a loved one a few years ago and is only just getting over it. I told them that I refused to make any decisions and as they had played God in the matter and not heard my cries before. They told me they are not asking me to make a decision as they already have. I then told them how they had ruined my perfect family, a boy and a girl are what everyone wants and how we had made the decision to never have any more children as for both births there was an immediate threat to life for me and my babies when they were delivered.
I had brought a healthy but low weight baby into the world and they missed the vital signs of infection and now they were just finishing the job. I shouted how unfair it was how I was treated and discriminated against at Croydon and relayed my journey to them. The new doctor then jumped up crying, saying I cannot do this and then slumped back in her chair. I then realised that our daughter was in the room and kept my composure and could not believe they would do this in front of a 2-year-old. I begged for them to at least let the treatment run till Sunday to give me time and friends and family to come and say goodbye.
We then took Darshay to say her goodbyes to her brother and she told the nurse that’s not my brother that’s just D’Sharno. It broke me I had to stay strong for her sake and watch her sing twinkle twinkle little star, touch his hand, tickle his feet and say goodbye and that she will miss him.
Later on, our child minder, who came with her granddaughter to whom our daughter is very close to, went in with Anthony to hear what had happened. She aired her views as she was there from the beginning and heard all of his updates daily.
Then later my friend, the child minders daughter, came to the unit and also went to air her opinions as she was under the impression that he was otherwise going to be ok apart from the brain damage which we all now accepted. The child minder then left with our daughter and her granddaughter.
Later through the night my friend came after work to offer support. All four of us sat on the bench outside talking when a few hours later I received a call from the unit telling me that I will need to make my way up there. All 4 of us rushed upstairs and when we got there they looked surprised it was not just the two of us and said everything is fine he just had an air bubble in one of his tubes. We then all took it in turns to see him. Then eventually all 4 of us were in the room asking what he was now on. His adrenaline would last till 1800 hrs on Sunday and although his morphine would finish earlier it would be topped up until then. I was so hurt they promised me a brain-dead child and they were taking him away.
Day 44 – Saturday, 20 th July 2013
I must have only slept for 2 hours and remembered that I promised my daughter and my friends’ daughter that I would buy them pyjamas for a party that day and I would do their hair. I walked to the shops and came back and met Anthony back at the house and we made our way to Thornton Heath. I got them both ready when at 1514 hrs my phone rang. It was the doctor asking where we were, and could we make our way. I told her we would be there in about 15 minutes and to try and keep him till then.
At 1517 hrs my phone rang again, and I was told sorry he has gone and to drive carefully and not to rush. We got to the hospital and I met my old manager and colleague at the entrance. The look on my face told them what had happened. We took that walk to unit and when we all got there they looked shocked that we had people with us and they were tiptoeing around us. We went to where he was and there was a screen around his incubator and a nurse was holding him. I took
him and was in pieces and so was Anthony.
I saw a lady at her baby’s incubator and felt so jealous when I was watching her, and she just stared back. It was awful. They then said they have a Moses basket in that same room we had all our meetings and I walked cradling my boy. As we got in the room everything seemed so staged.
I felt a funny feeling. I sat holding him and eventually looked at his face. My first words to Anthony were that he looked rotten. He was solid, and his mouth was moulded open, his tongue black.
I looked up to the doctor and asked to please answer me honestly that the days he choked on his vomit was that the day he died, and she burst into tears saying yes. Then covering her face and then sobbing. I realised quickly as she sat up straight ready for me to ask questions. So I immediately thought to say, don’t worry at least I was there as his soul left his body. I felt there was a big cover up going on and to me D’Sharno looked as though he was decomposing.
My ex manager and colleague also came to say their goodbyes. There was a point when I was kissing his face and then held him next to me and Anthony told me to stop as I was crushing his face and realised fluid was on my top where it had leaked from his face. This can’t be normal I told Anthony and we both spent quality time with him.
We were told by the doctor that she could book us an appointment at the mortuary and we would need to come in tomorrow to do the death certificate. I was numb and told her we will see. We all felt their behaviour was very suspicious on that day and felt they were hiding something.
Day 45 – Sunday, 21 st July 2013
We spent the day together crying and just feeling useless. Then Anthony had a message on his voicemail. It was the doctor telling him that we really need to sign the death certificate today and could we call her. This got me even more upset. How insensitive could they be and to ring Anthony’s phone after she told him on Friday that she preferred talking to him without me.
When D’Sharno was alive they would not use Anthony’s surname and said that as we are not married all decisions go through me and now he was dead it was Anthony they called. His phone later rang, and I answered, it was the doctor. I told her we are not ready today but will try tomorrow. She made a point of telling me that his death must be registered ASAP and they will get us a registrar to come to us at the hospital. She also told me that as she was the one present at death we need to see her. I refused and told we need time and she said I would be called tomorrow to arrange a time.
Day 46 – Monday, 22 nd July 2013
We got a call from the counsellor, Paula, asking us to arrange a time. I did not want to do anything as I was still in shock. She told me that she knows it’s hard, but it must be done today and forcefully arranged a time. We went in with our friend Louise as we suspected foul play.
They began to tell us sorry and did we have any questions. I spoke up stating how they missed the signs and how at such a great teaching hospital they could get it so wrong and the nurse that assisted him to choke was still caring for other babies. They then looked at each other and Paula said maybe you are not ready for this, let’s do this some other time. I found this very patronising as I had just spoken to them in such a diplomatic manner.
Louise then requested a break for 15 minutes. On our return we said nothing more on the subject and proceeded with the autopsy forms as they suggested a full autopsy and it could take 6-8 weeks for the coroner to release the body or organs, but I could just have a funeral without his organs. I said I want him whole and was happy to wait. All paperwork was complete, and I queried the cause of death and was told it could be changed after the autopsy.
Paula then told me they could arrange his funeral and I told her, no thank you I want him cremated. To which she told they may charge a fee for that and I said money is not an object. She then offered again in a pressuring manner that it would be completely free if they did it. I firmly said no thank you. She then went on to tell us she could not get a registrar and we needed to do it tomorrow as all deaths must be registered by law before 5 days are up.
She then arranged a visit for me to see D’Sharno’s body in the mortuary. We were also given a picture reluctantly of the moment after he died.
Day 47 – Tuesday, 23 rd July 2013
Went to see D’Sharno’s body in the mortuary and held him for over an hour and also ended up looking at his body for clues.
Booked an appointment with the registrar for tomorrow.
Day 48 – Wednesday, 24 th July 2013
Went to register D’Sharno’s birth and death at Wandsworth Town Hall.
Day 49 – Thursday, 25 th July 2013
Spent the day packing to go home for the first time since he was born. The last thing to do was to return the breast pump. I gave it in and thought to ask the receptionist for the mortuary number to see if his body was being investigated and to get them to check other areas that I was concerned of. The sister came and took over and told me she will call them for me. She went and called them from her office and returned telling me I could have his body back on Monday. I told her I would like to speak to them myself and she told me she will call them and I can ask what I need.
I replied in a nice manner and told her that I would not be asking the coroner any questions in front of her. I left and rang the coroner’s number she gave me and was told they are not aware of my son and did I sign a death certificate, and if so it would not come to them.
I then ran to the mortuary and told the gentleman that under no circumstances should my son’s body be moved, and we took their number. I then went to PALS to raise my concerns and was told it would be dealt with in the morning.
Day 50 – Friday, 26 th July 2013
Dropped off our daughter and went straight to PALS and was told I should receive a call from Dr Francis and his legal team as they had been in touch with the mortuary. We then went straight to the mortuary and demanded a meeting. I told them my concerns and they seemed to be defending the doctor, so I had no choice but to threaten them with the police if they do anything to his body.
I was then called by the coroner to submit a report and was also called from PALS to say the doctor and counsellor want to meet us, so we arranged the time.
The meeting commenced, and the doctor was talking to me as if I called the meeting and I told him I am here to listen to what you have to say as you were the one that arranged this. Paula then mocked me by saying anger is part of the process and she could give me counselling. I explained that if I was angry it would be a lot worse and thank you but no thank you. She then repeated herself and I replied the same and she asked the PALS gentleman to note that and she had called
my GP anyway and told him that I need counselling.
I then could not get anything from them and stated that I would like to lodge a formal complaint and do not trust them or have any faith in them. They got up, said that’s fine and left.....
This story exhibits a lot of the elements that make up the realtionship between patient and medical profession.
It is a tragic example of not Being Heard and it illustrates how little your personal opinion matters. This has grown out of a profession that has portrayed life as being so damned difficult and complicated that no ordinary person, per definition, can have anything sensible to say about it. Having established that, there is no point in wasting time to listen to you at all. You may get time to voice your opinion but in reality what you are saying doesn't connect to their comprehension of life and diseases, so it can never have any value.
It illustrates how doctors are being manipulated to have a one-directional mind. It is almost predetermined what the disease shall be, should it occur. Even if you don't find any proof to underpin your opinion, you are best to stick with it and follow the protocol accordingly.
The first rule of "do no harm" is not being considered. Doctors are being trained not to look in that direction and certainly never to consider the fact that treatment might not be appropriate. There is a neat separation between what scientific papers tell us about treatment protocols and maintaining the same protocol in practice. Simply carry on on the basis that more research is needed.