Wednesday, 21 July 2010


This was a living nightmare for me,my mind was everywhere,i could not fully understand what was going on,the only thing i knew was that it was beyond me,and that i could do nothing in my power to help my daughter.I felt i was failing her,but none of this,was my fault,but even though,i could not start to feel guilty myself,as i had done everything in my power,to take her to a safe place,well that is what i thought,it turned out,that i had handed my daughter to a killer,that is how i felt.
I sat there with her,while they were doing all the procedures necessary to make the journey to Liverpool. I watched her,and hoped,at any minute,she would open her eyes,now that 70mls of fluid had been drained from the brain,but it was just not going to happen,it was all a dream,a dream that was not going to happen.
I asked if i was allowed to go to Liverpool,in the Ambulance with her,but i was told no,that there was anaesthetists and a lot of other doctors,and professionals going with her,and that i had to follow on,in an ambulance car.
Ayesha went on her journey,i had doctors and nurses rushing to my aid,giving me toiletries,asking did i need anything,at this point,nothing mattered,all i wanted,was my daughter to survive,the journey to Alder Hey. It was two hours,and two hours is long,when its life and death.
We followed the ambulance,on the A55,i was driven by a young chap from Caernarfon,he had been breifly told the story by the hospital,and of course he tried comforting me,on my journey,he knew i was so scared.He was telling me everything i wanted to hear,trying to put a smile on my face,poor bloke,nothing worked,but i was very appreciated of his support,whoever he was.
Going up the Dduallt Hill,the Ambulance slowed down dramatically,we were a bit of a distance behind it.To me,something serious had happened to Ayesha,allsorts of things were flashing in front of eyes,thinking the worst. It eventually started going,and my heartbeat,slowed down,i was totally relieved. Another obstacle crossed.
As we headed for the Wirral,the Ambulance took one route,because the tunnel had been closed,for emergency only,so that the ambulance could go through, we had to go another route.
When I arrived there,Ayesha had already gone in.I rushed to the Reception area,and was told my daughter was having massive brain surgery,as we spoke,and it could be something like 5 hours,on us getting to know something. It was about 2pm,by now,i had a long wait,all i could do was walk around the grounds,and go back in,go for a drink,in the canteen,to steady my nerves,well to try and steady my nerves.
I was there,alone,and could have done with support,i have never felt so alone in my life,the nurses,were amazing,they were so caring and suppportive.
When i got back,a Neurosurgeon,came up to see me,and said that Ayesha had,had two major operations,to drain the fluid from the brain,they had inserted two external shunts,and was living in hope they would work. But,while he was talking to me,he said another Neurosurgeon,was at the same time,reopening her skull,because she had a massive clot on the brain,due to the failures at Ysbyty Gwynedd,where the damage had been done,due to neglect.
All I could do was await some news,and hopefully it had been a success. They could not tell me anymore,because they did not know the extent of the damage,as yet.
About 7pm,it was all over,and she was eventually brought through to Intensive Care. She looked weak and pale,but as pretty as ever,her hair obviously shaved,and loads of tubes. It was just the beginning,it was going to be a long haul for me,and for all who cared for her.
I did not class i had a partner,because i had asked him to be with me at the Hospital,but he still said the same thing,that he could not be there,due to work commitments,I could not believe,why someone could be so heartless,at such a devestating time,when i phoned,and when i was upset,he would turn it around,as if it was nothing,in what i was going through.To be honest,i am glad he was not there,it was bad enough,as it was,and i think it would have been worse.
Days went past,and they tried to explain,a few things,what they had done,and the usual things,that go on in hospital,but three days after the operation Paul May,the Consultant Neurologist,called me in,to give me the devestating news,that Ayesha was totally brain damaged. The extent of the damage was severe,and the prognosis was very bad. I was told that the temperature gauge in her head,had finished working.Her temperature would go up to over 48*.She was on a cooling mattress,it did nothing,she was burning up so much,that you put ice bricks on her body,only to melt in seconds,there was even steam coming from her body.It was heartbreaking to watch,as a mother.
Staff on the Intensive Care,admitted to never seeing nothing like that before,and when their shift was up,they would find themselves thinking about her,and even making calls in to work,to check on how Ayesha was doing. That is how bad things were.
They believed the shunts was not working,and decided to reoperate on her brain,again,and see what became of it,so they put a new type of shunt in,again a few days later,they came to the conclusion,that water was still collecting on the brain,that is why Ayesha,was still not able to breathe on her own,there was so many problems.They had tried her,and she failed after a couple of hours. They did say,if there was a tiny improvement,they would try her off the ventilator again,and see what happened. In a week or so,that is what they did. This time round,she coped better,and hung on there,breathing by herself. Of course,i was on cloud nine,thinking that she was getting over the worse.
They brought a special blanket that was handmade and put it on her bed,and said the blanket would be going home,one day,with Ayesha.The Special Blanket,is given to children,who are seriously ill,and if they survive the trauma,they can take it home for keepsake.
It cheered me up,giving me a more positive outlook on her health,at that time.
It was just all the waiting,for news,and waiting for Ayesha,to open her eyes,that we had to do now. Going up to the unit,was hard,not knowing what to expect,from even an hour ago,because it was touch and go,all the time.
They all hoped and prayed,that she would improve,but in a matter of days,Ayesha seemed to deteriorate,i did not want to believe this,because it was too hard.
I was called in to have a discussion with around 13 Proffesional people,and they brought a Nurse in,to be there to support me,because they had bad news to give me.
I was told that she would never get better,and the next step would be,to give her a Tracheostomy,which means,a tube in her throat.
I felt that Ayesha would be going through more torture,again,but the prognosis would never be good,as i was told,she would be in a vegetated state,the rest of her life.
From a little girl,who understood everything,could see,hear,was intelligent,and was just unable to walk,she would never open her eyes again,because she would be blind,she would not ever understand,she would not smile ever again,i could not imagine it,not for her,nor for me.
I was devestated,angry,in shock,numb.
They had mentioned Pallative Care,after her first major brain surgery,but I did not take it in,at the time,I did not understand much about it,and being i wanted to fight,for my little girl's life,i also did not want to know,at that time. I thought that she would improve,in time. I could not give up on her,and had to give her a chance.
The time came,when I had to make decisions about my Daughter. It was the hardest part of my life ever. People make decisions on a daily basis,what are they going to have to eat today?where to go on Holidays?
Making a decision to let your daughter die with dignity,was devestating.I had to leave the Hospital,for a couple of days,to try and think straight. I had to do what was right for Ayesha,not for me.
For me,even though she would be in a coma forever,in her bed,I could still see her,hug her,tell her i loved her. I would not get any response. It would not be the life Ayesha,would have wanted. She was a sunbeam,such a joy in my life,brought me endless happiness,and to think,she would be in her bed,the rest of her life,asleep. I could not bear it.
I thought long and hard,cried my heart out,could not find the answers i was looking for,but the only answer that was in my head was,not to let her go through more pain,in her life.
I had to decide,that if she failed to breathe on her own again,that we were not to re-ventilate her.
I was asked to go up to the Ward on the 10th February at 6pm ,when the tube was being taken out,for the final time.
My legs were weak,knowing what was ahead of me. I awaited for them to do the procedure,because they did not want me there. It took about 15 minutes in all,and then,i was allowed in.
She looked the same,looked at peace,that was the hard part,seeing her,as she used to look,nothing had changed.The only part that had changed was her arms and legs,damaged by the brain damage,that she had postured so much,it had left effects on all her limbs.
The Nurses walked in with the trolley,full of drugs,drips. It then made me realise that this was it,this is Pallative Care. They gave her morphine drugs, and just waited.This went on,until the 13th February. I was told,that all the organs were finishing..It was so hard. Her heart had slowed down dramatically in the afternoon of the 12th.I was offered to go for my last cuddle,in her bed,in which i did for 2.5hrs,i knew it was the last time,we would be cuddled up,together.It was torture. She would only take a few breaths a minute,and when she did not breathe,i thought,that i had lost her.
It went on like this until Ayesha,took her last breath,at 2.10am on the 13th February 2007.
This Friday,23rd July,Ayesha would have been 14 years old.We shared the same Birthdays.

Tuesday, 20 July 2010


We arrived,and it was a relief,to arrive,i knew,well i thought, i knew,that Ayesha would be in safe hands,she was at a hospital,that could save her life.
People stared at us,when we went in to Dewi Ward.Passers by,must have seen her looking so ill,and saw me drained,by it all. We were seen,in a small room,by a young doctor.Being Ayesha's hands was so cold,he could not do much,until they warmed up. As he walked away,it was only a nurse,me and Ayesha there, Ayesha had another episode.To an outsider,it would have looked like epilepsy,but being Ayesha had them now and again,during growth spurt,due to her prematurity,i knew these episodes,were not fits. She was on medication for them,and had been for several years.
The nurse had forgotten to put the bars on the bed up,and i had to remind her,because in this episode,Ayesha would have fallen on her head. The bars were put up. She came round,after a few minutes,and we were moved to a ward,a main ward,but no other patients in the bed. She looked lost in a big ward on her own.
She asked what was going on,this was around 5.30pm,i told her that we had to wait to see someone,and see what was going on with her. She was scared too,and still said that the headaches,were doing her head in.,Ayesha's words.
I had to ask the Sister to keep an eye on her,so that i could go out and phone important people,that would want to know what was going on with her. I was only out ten minutes,at the most,and on my return,i could not believe my eyes,Ayesha was trapped in the bars on the bed,and swallowing her own sick.I was so angry,and made a point of complaining about this incident,i had left my little girl,in their capable hands,so they should have looked after her.
I had to calm down,and try and see the situation,as it was...serious.
I had not seen nobody for about 3 hours,because there was nobody available,so i went to complain,yet again,and i was told,the doctor that Ayesha needed to see,was busy in the baby unit,with a sick baby. I could not understand the system,surely there was more doctors available? I was going through torture,watching my daughter suffering,it was like watching someone going through a lingering death,and you were made to watch it.
A doctor finally walked in at 9pm,and said,"I've arrived at last",i was so angry,and made it known to him,how angry i really was.
He took a look at her,and it did not seem,he had a clue what was wrong with her.I told him what i thought,was causing her the extreme headaches,sickness,but he was not convinced.
I explained the arching,posturing,but being he had not seen it,he would not comment on what i said. Shortly after,he saw what i meant,and he thought it was fits,i told him i doubted this,and i think he started to doubt it too.
I had to force him to take her bloods,because otherwise,nothing was being done,to her,there was no point standing there,looking at her,and not doing nothing,to save her life.
He started taking blood,and doing the examinations,he needed to do to her. Of course blood results would not come back straight away,and being i was feeling for my daughter,i was getting so impatient,by now.
The episodes were getting more frequent,the arching was getting worse,they were lasting longer,and i was getting more and more scared,each time.
It was 10pm,i was still alone,with only a nurse. Ayesha did ask me,in between the episodes,"What is the Nurse doing"? I replied,"Making your headches better for you".
They were Ayesha's lasts words ever. She had a massive episode,where she did not come out of it. They gave her Diazepam,that did not stop the episodes. By now,I felt sick inside,petrified,I could have screamed out,i did not know what to do.
They advised me to go out,to get some air,because there was a procedure they needed to do. Five minutes later,i was back in,the room,and it stunk,the first thing i remember,the smell was so bad,i could not breathe,they had rectally inserted a drug,to try and control the episodes. They said the episodes had finally stopped,but also that Ayesha had slipped in a coma.
It was a torture.Watching your only child,dying in front of your eyes,and there was nothing you could do,but try and still trust these people.It was devastating.No mother or father,would ever want to experience it.
They told me to try and get my head down,it was a joke.How could i sleep,knowing that my daughter could die. They phoned Lewis Ingram,the Paediatrician,but he refused to come out,and said he would instruct the doctors,and junior doctors,over the telephone.What use was that,to Ayesha and me? It was his place to come out.If he had listened to me prior,it would never have come to this
It was 6am,doctors and nurses were in and out,checking Ayesha's pupils,to see if they were dilated,there was no movement whatsoever.I had so many questions,i needed answers to,but i was so numb inside,i could not think straight.
I kept asking them about her eyes,but the communication was poor,nobody telling me nothing.I felt bad,felt like i did not exist.But during the course of the night,one Sister,that was on shift,had told me,that if Ayesha did not have disabilities,she would have been fussed over,the sister herself had tears in her eyes,feeling helpless,just like me.I could not believe what she told me,to me that was discriminating against the disabled. Then again,some of what she said,could be true. It sure felt like it.
Lewis Ingram,arrived,just gone 7am,and came into the ward to take a look at Ayesha. He took one look at her,and the look in his face,said it all,he was scared himself. He knew by now,that he should have listened to me on the 3rd January 2007,when i first told him,that Ayesha had a blocked shunt.
He said to me,that she was very ill.My words to him "I count you responsible,if my child dies"
I was so angry with this man. I hated him,by now,for not taking notice of a Mother,who knew her only child,and especially a special needs child. You know everything about a child,you look after 24 hrs a day.Any facial expressions,that is different,anything,you pick up on. A mother's instincts,is always right.Do doctors believe parents? No,because they are professional people,who are not always right.
Ingram,insisted on a brain scan,a CT scan,i told him,"thats what i asked for on the 3rd January",he said he was taking her down,he did ask me to go with him,i could not go,as i felt ill.I awaited nervously for Ayesha to be brought back,knowing in my heart,it was going to be a bad outcome,that the damage had been done,the night before.
An hour later,and they came back. His face,said it all,the other paediatricain,that i knew,came running up to me,cuddling me,telling me,how sorry they were,i could not stand up,due to weakness.In my heart,i felt it should have been me,fighting for my life,for my little girl,to have a normal life. Life is not like that is it? you cant always have,what you want.
Ingram,came up to me,and told me,in these words,"You were right,all along,and i am sorry".I was so hurt,and angry,and wanted to hurt this man,because of the way i was feeling.
I did not know what the next step was.Ingram was running around the ward,like a headless chicken,not knowing what to do,knowing Ayesha's life,was in his hands.
He phoned Alder Hey Hospital in Liverpool,and told them the story,and that he had failed to believe me,and that Ayesha had serious brain damage,now. The headaches she had suffered,was the brain being squashed by all the fluid.
Alder Hey,gave him permission to drain the fluid from the brain,so that Ayesha could make the Journey to Liverpool.I stood next to Ingram,while he did this procedure,it was torture for me.Her prognosis was looking very poor,they did not think,in her condition,she would make the journey to Liverpool.


If she was not strapped in her wheelchair securely,she would have been on the floor,because she could not bend her waist.I shouted her name,no response,eventually in my panic,i opened her belt and lifted her,in my arms,but she was so stiff,i could not bend her body, Trying to carry her down in that postition down the drive,to the car,was almost impossible, but i had to,and try to open the car,at the same me,it was matter of life and death,and i had to think sharp.
As i opened the car,and had her in my arms, she opened her eyes,i told her she scared me, she asked me "why are you scared"? i responded,"because i was shouting your name,and i was not getting a reply",she brifely smiled.
I sat her in the front of the car,securely,she had to be in the front,because i would have to make sure we stopped in safe places,to give her enough fluids,in case she was dehydrated. I had to stop in the local garage for petrol,to make the journey,This is where my so called partner,at the time,worked as a mechanic. He gave me petrol,in my car,and told me that Ayesha looked at death's door. As I was about to pay,i then realised,that when Ayesha was posturing,outside his home,i had dropped my purse in the garden,in my panic,so i had no money. He told me to drive my car to his home,to get my purse.Iwas scared,because,every moment wasted,could mean Ayesha could die. I thought he would have given me money,to make it to hospital,but being him,he never offered,he was so cold about it all,and i needed support,at a time like this.
I begged him to come to hospital with me,being i had no family.My mother was in a local residential home,having had a stroke,years ago,and she was the only family,i had. He refused,point blank,and said "i cant come,i have MOT's to do. I was gobsmacked,in my situation. I drove to his home,with Ayesha,by my side,picked my purse from the garden,and started again,on my journey to Ysbyty Gwynedd.
I had to keep a close eye on her,i was petrified,hoping we would make it,to keep focusing on the road,and making sure my daughter was going to be okay. I could not take my eye off the road,in case,i killed us both. Every stretch of road,seemed never ending,and every layby seemed so far away.I needed to stop in different locations,to give her fluids,i wanted to do everything in my power,to save her life. I had to keep her awake,i did not want her dropping off into a coma,again.
We must have stopped about six times,in different laybys,on our journey.


Ayesha was born prematurely at 26 weeks,on the 23rd July 1996,weighing 2lb 11. Being she was born early,she developed hydrocephalus,and cerebal palsy. The first few years of her life,she attended hospital on a numerous occasions,because she had disabilities.She was not able to walk,unaided,so she had to be dependable on a wheelchair to go around.
She was a happy little girl,understood everything,but even though she was with her special needs,it never affected her personality. If anybody felt downhearted,seeing Ayesha,would soon cheer people up. I never saw her unhappy.To her,being the way she was,was all she knew,she would never allow it to spoil her life.
She attended Ysgol Maenofferen,in Blaenau Ffestiniog,in the early years of her life,and made lots of friends.All the children idolised her.When we moved out from Blaenau,she started Ysgol Eifion Wyn. Again,made loads of new friends in the school,and the teachers and Headmaster,Ken Hughes,thought so much of her.
If for any reason,due to hospital visits or sickness,the children in school,would be heartbroken,that she was not at school,and they would make her cards,to get well quickly,to return back to school.
Ayesha when born,had been diagnosed with her problems,and the future looked very bleak for her,and for me as her mother. They were determined in Alder Hey Hospital,in Liverpool,when she had her first major brain surgery,that she would never talk,smile,walk or basically be able to do nothing.She was so determined,as a child,and the willpower she had made her the strong character,that she was. I was determined,that one day Ayesha would prove the neurologists in Liverpool,wrong,and when she did,it was the happiest day of my life. The bleak outlook,given to me,as a parent,was fading away,slowly.It was a slow process,but every obstacle she went over,was one less to go climb over. I was so proud of her.
I took her away once,to start a new life,being that I had heard there was a good school in England,that specialised in children with cerebal palsy,they did treatments in the school,that you would normally find in places abroad.She enjoyed it at the School in Kettering,but in time,we came back to wales,because our life did not go as planned.
She had major surgery on her legs back in 2002,after we had come back from Bulgaria,she went through a lot of suffering,after the operation,but it was surgery,that could not be avoided. She had two hip replacements,being that she did not walk. Again,she was strong,and came through the operation,and began to improve her legs,with the aid of splints. She was splinted daily,to strengthen her muscles. She would have physiotherapy in her school,by the physio team in Caernarfon,Ayesha was great friends with all the team,there was so many people involved in our lives.
In Novemeber 2006,Ayesha had said that there was something going on in Ysgol Eifion Wyn,for Children in Need,and that she had to dress up in a fancy dress. While she was at school,i went out shopping,and saw the dress,that she is wearing above in the picture,together with musical shoes,i thought i would surprise her.On her return from school,i told her that i had a present for her,and she was so excited,and asked could she try it on,she looked liked a princess. She attended the school,the next day,wearing it,and she was so proud,asking me,did i think she was cute. It was so nice to see her happy.
A couple of weeks later,it was time to christmas shop,Ayesha loved Christmas,she always had loads of presents from people,she was a people's person,and very popular. She was looking forward so much to Christmas,and going out to see the lights in the villages. She enjoyed going to see the Lit House,at Bala,that was a yearly event,that we did,because santas grotto was there too. On the way back she would insist on fish and chips in Bala,and then not long to go until it was Christmas.
This occasion,Ayesha had a chest infection,i was not worried,as such,but did take her to the doctors,to get antibiotics,for it,because i did not want it spoiling her christmas,if it could be avoided.
She was not as excited,about Christmas coming,being that she was not feeling herself.We plodded on over Christmas,so that she had a good one.
On the 2nd January 2007,she started complaining about having headaches,so again,i took her the doctors,he examined her,and said she needed another antibiotic,so she was given cefalexin this time,and they did think this drug would work on her,and ease the coughing,and this sickness. On returning from the Doctor,she insisted she wanted to go and lie down,the doctor had said she needed enough rest and plenty of fluids,so of course,i went by what was said.
On the morning of the 3rd January,she was still complaining of headaches,and i noticed a swelling on the neck,of course i panicked and took her down to the surgery again,we were told that it was swollen glands,and nothing to worry about,that it would go,once the chest infection cleared up,that she needed to rest. I would not have that,and insisted on taking my daughter to Ysbyty Gwynedd. I ended up driving her to hospital. We were seen by students at first,she was not looking at well at all,and i was worried sick about her condition,she was lethargic,and very pale looking,not like Ayesha to be that way. I had been through so much with her,but this time,i knew in my heart, that something was not right.
We had to hang on and wait for a doctor to see her. Finally after about an hour,A doctor arrived,Lewis Charles Ingram,he was the Paediatrician,on Dewi Ward. I explained my case to him,and told him,that Ayesha had a blocked shunt in her head. A shunt was put into Ayesha's head when she was only six weeks old,because she developed water on the brain,due to prematurity. I was told after it was done that if it had not blocked in the first two years of her life,that it never would,so i did not really worry about.Nobody checked it for her after the age of two. I thought this was normal,being nobody told me otherwise.
I knew what to look out for in the early years,to look out for headaches,a red line coming down the neck,and if that happened,i would have a maximum of four hours to get her into somewhere like Alder Hey Hospital,Liverpool,being that it was there,it was inserted.
Lewis Ingram,told me i had nothing to worry,i told him that i knew Ayesha had a blockage,he failed to listen to me,and told me i was completely wrong,that i had nothing to worry about,he would give her chest x rays in the morning,i told him,i did not really want chest x rays,i wanted her to have an emergency brain scan,but he insisted it was not necessary. Ayesha was told to stay overnight.
We were both anxious,because i had to watch her suffering with headaches,but being a paediatrician had told me i had nothing to worry about,i had to take note of him,and put my trust in him.
Ayesha finally went to sleep,and looked quite relaxed,and when she was looking peaceful,it relaxed me. I had to try and rest myself,but was tensed and worried about her. I could not wait for morning to come,and being in hospital,every minute is like an hour,so it seemed a long way away.
At last it was morning,and now,i was awaiting for the Paediatrician to see Ayesha. He finally came round,and made enquiries about an xray,and Ayesha was taken down. I knew the results would be okay,but i was still adamant with him,that i wanted a brain scan,but i was still refused,and made to feel that i was an over protective mother,which was not true. I was not someone that fussed over the top over my daughter,she was strong,and had been through so much,we both had,so i could never be an over the top mother fussing.
I went with Ayesha,to xray,and returned to the ward,where we were given the news,i knew we would have,nothing wrong with her chest. We were told,that we could go home. I still was not happy,and was worried about the swelling on the neck,on the side of the shunt. I asked Dr Ingram,for adivce,i asked him,"What do i do if the swelling does not go down"? I was told "Make an appointment with a Paediatrican in two weeks time",i was not impressed.
They signed her out. I asked Ayesha before leaving the Hospital. "Are you feeling any better"? Ayesha Replied "Yes,headaches have gone" The moment she said that,it was a huge relief to me,i could feel the tension,going from my body literally. We chatted on the way home,she looked pale,but being she was responding to me,i thought she was better.
When we arrived home, she said she was tired and that she wanted to go to bed,she did not want food,only liquids,to me,then,at least she was drinking,so she would be okay.I tucked her into bed,and kissed her on the cheek,told her i would be back to check on her.
I was worried sick,i could not relax,but i had to try,because i couldnt,and didnt want to worry Ayesha,and make her worry about me. She was very protective of me,like i was of her.
The morning came,things were similar,just drinking fluids,having a natter now and again,but still not right,i then again phoned the doctor,to make sure that the way she was acting was normal,in her health,i was told,to give her a chance with her medication,so i did.
The following morning,i noticed,she was doing unusual things with her legs,and the headaches were still there,i got the doctor straight away,she came up,said she looked dehydrated,and to give her more fluids,and to keep an eye on her for the next 24 hrs,i did not and would not agree with this,and demanded them to get her into Hospital.I was told i had to wait for a bed,so in the meantime,i got her things ready,dressed her,and she asked,"where are we going",?i told her to hospital,to make your headache go away,she wanted to wear her pink fur coat,she had been given christmas,from me,she had not been out really since christmas,to wear her new clothes,so i dressed her up,warm.and put her in the wheelchair. My head was so full of worry,and when she was outside,in the wheelchair,i remembered i had left my purse inside the house,i put the brakes on,ran inside,grabbed my purse,and went back out,i was only 30seconds all in all.When i got outside,i could not believe what i saw. I was so scared,i lived in a remote place,nobody there to help,there was only me and Ayesha,she was half commatised,and was posturing in her chair,i never had seen nothing like it,ever.It was the most scary time of my life.