The labour was quite long and in the end Mr Davis decided that the baby was in distress and an emergency caesarean would be needed, I was prepped and rushed into theatre, I can remember thinking and saying no matter what you can not let me lose this baby not now I have carried this baby for nine months.

The caesarean was a success and Shobian was born 14 hours after I reached the hospital. The first thing that I can remember is Mr Davis coming in and standing beside my bed. He slowly introduced himself asked how I was feeling and then explained that because it had taken a while to get Shobian out by caesarean section she had been starved of oxygen at birth. I can remember lying they’re thinking I’ve lost my baby after all I have been t+OK Message 1 has been deleted. N style="mso-spacerun: yes"> Gently Mr Davis shook my arm and I came back to reality and I said “she’s gone isn’t she, I’ve lost her” “no” he replied quite simply, she was being closely monitored and all her organs had been tested and seemed to be working properly at the moment.

As time went on we were able to take Shobian home, at first everything seemed fine, and it wasn’t until she was almost a year old that I noticed that she wasn’t taking any notice when I dropped something or if one of the others slammed the door or screamed. When the health visitor came around I asked her and she said we would book her in for an audio appointment at the hospital. The appointment came through quite quick and on the morning of the appointment I felt sick but put this down to nerves.

After the test the doctor whose name I don’t remember said that she had a hearing impediment, I sat dazed and confused and at first it was as if this wasn’t happening well not to me, not to us, we were the perfect family why would anything be wrong.

After I got home I dumped all the leaflets and well meant advice in the bin, after all what did they know this was our daughter, I would get a second opinion, a third if necessary. I sat and thought for a while and then shortly before I had to pick our other daughters up I rang my GP and made an appointment, if I was going to get a second opinion then I was going to do it properly. The appointment was made for three days later but that wasn’t quick enough.

The next day Shobian slept late and when I went into her room to wake her she was having a seizure. I screamed for help and everyone ran into the room, Jodie phoned for an ambulance while Ric my husband helped me to stop Shobian from knocking herself against the wall. Within minutes the ambulance arrived and although she was still having a seizure they managed to get her to hospital.

After what felt like forever a doctor came and spoke to us. He said he was Dr Harper or something like that, he was the consultant in the emergency department where the ambulance had taken Shobian. They had stabilized Shobian and they were sending her up to the children’s ward where she would go for a CT scan to find out why she had the seizure.

The scan revealed that Shobian had suffered some brain damage, at first I thought it was from the seizure but Dr Taylor explained that as Shobian hadn’t stopped breathing throughout the seizure this was probable caused through the lack of oxygen she had at birth.

It took a while for this to sink in; does this mean that she wouldn’t have had the seizure if she hadn’t been starved of oxygen at birth? Slowly it all makes sense she’s almost a year old and hasn’t made any attempt to crawl, stand or walk, she can’t hear and now she has epilepsy.

Dr Taylor is explaining that she may have had the seizure anyway and that epilepsy can occur in anyone although there is a chance that it will stop her doing some things, I can’t take all this in so Dr Taylor leaves us for a while and comes back later to explain the medication she is on, when and how to give it to her. She also gives us an outpatient’s appointment so that we can see a doctor who will discuss what the possible out comes of this news may be.

As we sit there listening to what is being said, I feel sick and before I can say anything or move I am throwing up. The doctor is very understanding and once I am cleaned up and advised to see my GP another appointment has been made so we can go back and discuss this further. Four days later I am still being sick and went to the GP nothing would have prepared me for being pregnant again. I sat there in a world of my own as he explained that as my last pregnancy went full term there was a strong chance this one would as well.

Back at home Shobian had another seizure, they are more often and now and rarely a day goes past without one. Shobian is now a year and half old, I am six months pregnant and the audiologist has agreed that Shobian’s hearing may improve with hearing aids, finally after months of waiting and things she has one, it will be another month or more before she gets the other one as we need to find out if this one makes any difference.

As it has been confirmed that Shobian has problems with speaking, eating, walking, hearing, learning difficulties and epilepsy. Ric has been to see a lawyer and it seems that we may have a case against the hospital, I’m not sure it is worth the bother but it’s his way of coping so I have left it to him. As the months past Shobians social worker came and chatted about what would happen to Shobian when I went into labour. We didn’t have anyone who could help out and the other girls had all asked and were allowed to go and stay with a friend for a couple of days the only problem was none of their friends could have Shobian. It was decided that two days before I was due Shobian could go to foster carers until I had had the baby and could come home. As the day approached I was glad that she could go as I was finding it hard to look after any of the girls never mind Shobian, we sat there waiting and it wasn’t until 8pm that Shobian’s social worker called and said that there was a problem with foster carers and that before the end of tomorrow they would have found somewhere else for her, I went to bed thinking at this rate Shobian will be present at the birth, I didn’t realise how true this would be.

Three days later I woke with back ache and thought this is it, I phoned the maternity unit, I had reservations about having another baby at the same hospital I had Shobian but it was the closest and therefore the safest place to have my baby. The second thing I did was to Phone Shobian’s social worker and tells her that we needed care for shobian as soon as possible. By lunchtime my waters had broken and I was on my way to hospital with Shobian.

At the hospital I ask if there is someone who could look after Shobian for me the best I am offered is a playpen in the delivery room, I ask for them to contact Ric who was upstairs in theatre with a patient, according to the midwife he wasn’t answering his phone.

This was it I was going to give birth while looking after my severely disabled daughter. I screamed as another contraction ripped through my body, as I did this Shobian began to cry, I went to slide across the bed so that I could comfort her, impossible the babies head was showing and I couldn’t move, as the next contraction came I realised with horror that Shobian was showing all the signs of having a seizure, I screamed for someone to help her before she hit her head or swallowed her tongue, the midwife rang the emergency bell and a young female midwife came in and went mad when she found out that we wanted a child care service, by this time Shobian had begun to swallow her tongue, I was putting my unborn child at risk by trying to get to Shobian so I could help her.

As I got to the side of the bed the consultant came in, saw what was happening and grabbed the pillows off my bed, put them around Shobian so she couldn’t bag on her head on anything hard, yelled for someone to call the on call paediatrician and, and to be honest I don’t know what happened next as I was giving birth to my beautiful daughter Kealeigh Sinead. After they took my daughter to make sure that she is okay I ask about Shobian, apparently they have found her a bed on the children’s ward and are doing some tests to find out what caused this seizure.

Later that day Ric arrived along with the social worker who was supposed to have found some care for Shobian while I had the baby, apparently the paper work was delayed and another family had a higher priority, I cant imagine what could be classed as a higher priority but what is done is done and there is nothing I can do to change that.

Three days later and I am taking home our new baby and Shobian, it’s strange in a way I expected it to be like when we had the twins, but it’s not, Shobian’s health is getting worse and every time she has a cold we go to hospital as her seizures happen more frequently and making it almost impossible for us to keep her stable at home. All of Ric’s+OK 10680 octets e been great, it’s been so long since I had seen them, well in a professional capacity anyway, they all brought me and the baby teddies and wonderful things before we leave to go home.

Kealeigh Sinead, Jozie, Jodie, and Codie are all used to Shobian’s seizures and do what they can to help but she has developed a tumour, according to the specialist this has nothing to do with her other conditions it’s just bad luck. We have spoken to the social worker again and she has processed an application so that we can have someone come in and look after Shobian for a couple hours a week so that we can spend time with the other girls, especially Kealeigh Sinead who is now two and a half and doesn’t quite understand why it is usually Jodie who takes and collects her from nursery.

We had a letter through the post and a confirmation phone call today telling us that we have been granted help, and someone will come in for three hours a week starting next week. At dinnertime I tell the family who are all relieved and happy that we can spend some time together with out worrying about Shobian.

On the Tuesday we all sit and wait for this carer to arrive and after two hours we give in and assume that he or she isn’t coming, the following day I ring our social worker only to discover that who ever was coming to us has gone on holiday for two weeks and no one else is available.

Disappointed and annoyed I hang the phone up and prepare my self and the rest of the family for having another two weeks before we get any help at all. The day before we are expecting someone to come and give us a break from Shobian we receive a letter saying that as we have managed so well until now, they are reducing the amount of help we are getting, we are now going to get an hour a week, I sit on the floor behind the front door crying, there is no way we can go on caring for Shobian on our own, neither of us work anymore as it takes us both to lift Shobian some days and if she has to be held down during a seizure I cannot manage alone as she bites and kicks as well as hit you.

Ric isn’t as deflated as I am and makes the call to social services but nothing budges, it’s all they can allocate us and even if we made an appeal it could take months, and then we could end up with no help at all. Ric puts an helpless arm around me, I know he would love to be around more, but we can only just manage on what he earns as it is, I manage a weak smile and haul myself off of the floor and attempt to make an effort in tidying the house up.

For the first time in years, Ric’s daughter Jess has shown an interest in her father’s other children and me, she offered to babysit and Ric and I agree that as a trainee nurse she should be able to manage besides she is bringing Sandy along and having worked with Sandy I know she is perfectly capable of baby sitting and will ensure that nothing will happen to my children.

As we get in the car Ric turns to me and Says “Diane, come here” and with that he takes me in his arms and holds me, I realise that since Shobian got worse we had barely touched one another. A few minutes later he recoils and we realise that we don’t want to go out we just want to spend some time together and make our way to the hospital where we make ourselves comfortable in the on call room, the beauty of this is no one will ever suspect a thing as Ric is on call tonight any way. We lie on the bed and talk about how we are going to deal with it when Shobian becomes worse and can we stop her sisters from seeing her when she is in so much pain, suddenly Ric’s beeper goes off and he reluctantly drags himself off of the bed and goes to find a phone, the expression on his face when he returns says it all

Shobian has been brought into hospital and is on the paediatric ward, we both run for the stairs and with out a care for anyone else, makes our way to the ward where Shobian is, when we get there we discover that a social worker has arrived and wants to know why Shobian was at home with a babysitter and not with someone who knows and understands her condition, I scream obscenities at this women who claims she is only doing her job, this only angers me further as if she had done her job in the first place Shobian wouldn’t have been at home with a babysitter she would have been with the career provided but as yet we haven’t seen one.

I try and clam down as Ric put a comforting arm around me and pulls me into his strong body, as I my head reaches his shoulder I cry uncontrollable, I can no longer go on like this, I don’t have the strength, I can no longer bare to see my daughter in all this pain and I can no longer go on neglecting the other children, with Ric’s help I am led to the on call room where I collapse on the bed and cry myself to sleep, for the first time in years I have a full uninterrupted nights sleep.

The following morning I crawl out of bed, on my way out I realise that I have disturbed Ric who must have joined me at some point during the night. He smiles up at me and for a moment everything is like it was before we had Shobian and before we stopped having a full nights sleep. I sink back on to the bed and into his arms and wonder what the future holds for us. After a while Ric loosens his grip on me and together we get up and walk down to Otter ward to find out how Shobian is.

When we arrive there is a social worker awaiting us, she give us another disapproving look, one that just seems to say, who do you think you are leaving your child on a hospital ward while you sleep. I hold Ric’s hand for support and he supports me as we walk into the relative’s room. Again we undergo interrogation after interrogation and after spending an hour going around in circles I get up and leave I have to know how Shobian is, Ric follows me and we walk together into the ward.

Even though we are used to seeing people, mainly adults hooked up to monitors this comes as a shock after all this is our child not a patient who you have no emotional feelings for. I gently pick up her hand and I sit on the edge of the bed talking to her. As Ric sits in the chair with his upon mine we glance at each other and then at Shobian. As we sit there with our daughter Janice, Dr Taylor comes into the room and asks to talk to us about Shobian. We walk into Janice’s office and Ric silently closes the door behind us, as we take our seats I prepare myself for the worst.

Even I am surprised by the news that Janice tells us, apparently Shobian’s seizures are getting worse and the original diagnosis may have been wrong, in fact it looks like Shobian doesn’t have epilepsy and that the doctors are unsure about what are causing the seizures, the only thing that they could be sure of is that they will probable get worse. I look at Ric with self-pity in my eyes, are things not bad enough already, why must they get worse, what have we done to deserve this. Janice agrees to contact the social services as not only will Shobian’s seizures be more frequent but she will be incontinent and will need feeding, in other words all the independence she has she will lose, instead of progressing our daughter is going to regress.

I am beyond disbelief, beyond despair, beyond hope for I know this is something that we will have to deal with alone, no matter how many calls we make, how many forms we fill in, we wont get all if any of the help we are entitled to and why? Why we wont get the help is simple, there are enough resources, there aren’t enough staff Janice says we can take Shobian home later that day and before we do there is one last thing I have to do. Ric goes to tell the others who are sat with Shobian the news and I make my way to his office.

As I step inside I realise that it hasn’t changed since I was last in here, although I suspect the walls have had less to gossip about since I went on long term leave, just after Shobian was taken ill. I sit at his desk and switch his computer on, after opening the word programme I tentatively begin to type.

To Whom It May Concern:

No doubt you will have heard about my daughter, who is currently occupying a bed in the children’s ward, you will probable know her better as a statistic number, however detrition will occur and I feel the need to be with her and support her throughout this period of her life, there fore I here by wish to tender my resignation from my current post as Registrar for general surgery.

Yours Sincerely

Diane Griffin

D Griffin

I slowly fold the letter and place it in and envelope, which I address to Jan Goddard, on my way back down to the ward I place the letter in her pigeon hole. I walk onto the ward with a forced smile as I acknowledge that this is now going to be not only my life but my job as well.

Ric takes my arm and pulls me over until I am sat on his lap and Janice brings in Kealeigh Sinead from the playroom, finally we are a family again. We are assured that some one from social services will visit us first thing in the morning. We pack all the things that we have brought into the hospital and put Shobian in a wheel chair as the special buggy we should be getting wont arrive until after we have met the social worker and she has put some things in place.

Back at home I am relieved to be here rather than under scrutiny at the hospital, all I know what it feels to be a patient or a patient’s relative and it’s not nice. I put the girls to bed and came down to see Ric, somehow somewhere we will get through this.

Back at home I lock myself in the bathroom and begin to look through a booklet I have picked up from the hospital, okay so I shouldn’t have brought it home with me, but the help that we are supposed to get wont turn up and I know that I will need to find something and if this helps then so be it.

I begin to scan the booklet entitled “A Practical Guide for Disabled people”; finally I have something that will help me find some organisations that will help me care for Shobian. I feel guilty after all ii should no about all this stuff after all as a doctor I should be advising the patients on where to get the help but it in all honesty I don’t have any idea of what help I can get or where from. They were lots of phone numbers that I could contact and addresses to write to, I get out a pen and begin highlighting the relevant pages and numbers. By the end I feel much better and ready to contact these people.

I contact the voluntary organisations and within days I have piles of pamphlets through about where I can get day Care, something I had never consider before. I looked closely at this and decided that I visit was in order. Ric took the time off work and we went together. The school is situated several miles away but out of the ones I have seen so far this is the one I prefer. Millwater school offers a range of activities and care for children with all kinds of special needs and they have a place, Shobian could start after the next half term.

We decided to book the place provisionally and then make the journey back to Bristol to talk to the other children about moving to Devon. Jodie is the most supportive as it means that she wouldn’t have to take Kealeigh Sinead to nursery every day and would be able to go off with her mates after school. The twins are reluctant at first but eventually see the benefits after all I will have more time for them if Shobian had some care.

Ric has to leave his job, I’m not sure that he wants to or if it will be a good idea but he does it for the family, he manages to find a post as a general surgeon in Exeter Hospital, He is thrilled and within a week we have found a house, bigger than the one we have now so the twins can have a room each and we are moving in. The first day I take Shobian to school I leave her and return only to sit by the phone waiting for a call from the school saying that she has had a seizure and that they can not cope as well as they had hoped and could we take her away. That call never came and when I collected her she smiled at me, something she hadn’t done in a long time, she had had three seizures throughout the day but that was less than she had had when we were in Bristol. Apparently she loves the light and sensory room where you can touch lots of things and the lights are soft and everything glows.

Life is going well, and for a child who has a life less ordinary Shobian is doing amazingly well, she has lost the ability to walk and we have bought a hoist so that we don’t hurt her or ourselves when we move her from here chair to the bed. The hoist is not something that you can come by easily and most families have to struggle but we didn’t want that for Shobian. Whilst at school one day I discover that there is a holiday scheme that Shobian could go to, ,it called TICVAC and is a charlity that moves around the culm valley and gives parents a break through the holidays as well. The first time I take Shobian is during the long summer break and it’s wonderful for the first time since Shobian was born Ric and I have been able to take the girls our Bowling, Ice skating and doing all the things we hoped we would do with all out children.

A few months after we settled into out new life in Devon a routine check up at the hospital shows that Shobian is getting worse and the chances are she wont live beyond the following year, everytime she has a seizure she stops breathing for a varying amounts of time and slowly the parts of the brain that weren’t damages are dying off. We take her home with the intention of nursing her ourselves. This would be a painful experience for all the family but what else could we do. While talking to a parent at the TICVAC centre I hear about a hospice in North Devon called Little Bridge House, I obtain the phone number and the following weekend the whole family go to have a look around.

What we find is unbelievable for the rooms are brightly painted, there is room for us all to stay, Shobian can go out to the beach and do all the activities with the others while we spend some time with the other girls. The thing that surprises me most is the “angel room” this is a room that has angels painted on the blue ceiling to empahsize the sky and Cartoon characters like Winnie the Pooh, Paddington bear, Rugrats and many more on the walls, there is a princess four poster type bed with pale pink drapes and fairies on the blanket. The bed is called a cold bed and this is where they will bring Shobian when she dies. She will be able to stay in here as long as possible and we can come and sit with her, talk to her and say our goodbyes. As I stand here looking at the bed a question filters through my mindand I just have to ask what the boys think of the fairies, I feel so stupid as they have a set of pale blue drapes and blankets with footballs on them, at the moment they are awaiting the death of a little girl and the room is in preparation for her death.

I find the hospice a place of tranquillity and as I look at Ric I know instantly that this is where we want Shobian to be when her time comes, when the angels on the ceiling come and take her from us. Can we book Shobian in now or doe we have to wait until she in the last stages of death, I find myself asking all these weird questions, how can we book her in we cant predict that she will die on a certain day, and that’s when it all makes sense, we come and stay from the time Shobian’s seizures are almost constant and we don’t leave until, until she is with the angels. We know that she has about a year so we book a place for two weeks in three months time, a place for three weeks in six months,, a month in eight months time and by the time It gets to 10 months we book her a permanent place.

As for travel home I feel slightly guilty that when it comes to the time that our daughter will need us the most we are going to neglect her and put her in a hospice when she should be with her loving family, but that’s it she will be with her family it’s just that we have some help, I may have had to have uprooted my entire family, destroyed not only my own career but my husbands as well, taken us all away from our friends but we have the help that we both deserve and need.

The next eight months pass in a blur of seizure and medication, Jodie is taking the other girls to school and nursery, the one thing that I thought I would be able to do now that we had all this extra help. After three weeks of being up almost all night every night I call the hospice and see if I can alter out booking, I need a rest and so do the others. The following day Ric takes compassionate leave and we all go to “Little Bridge House”. Shobian has her own room and a nurse who will sleep in there with her to monitor her throughout the night. We decide that we are going to stay as both Ric and I are certain she is in the middle stages of death, I know what everyone around me is thinking that we don’t know and are just contemplating the worse, but you don’t work in a hospital for as long as we have and not recognise when someone is going to die.

Three days after we arrive at “Little Bridge House” Sobian is being dressed in the fairy costume she loved so much and is placed in the “Angel room”. We walk together holding hands down to our room and collect the girls, Jodie already knew what had happened and when we told the girls, I was shocked to find that Kealeigh Sinead went said “mummy” and went straight to Jodie for comfort rather than us her parents, we hadn’t lost one daughter we had lost two, for her entire life we had palmed Kealeigh Sinead off on to Jodie so that we could deal with Sohbian and now she didn’t even need us when something as tragic as this happens.

We walk together up to the “Angel room” and once in there we sit around the bed talking to Shobian about the angels is heaven and how they will look after her in the biggest playground there is. The tears fall from my eyes and I can see Ric holding back, silently choking on the tears he want to shed for his daughter. Jodie slowly gets up, picks up Kealeigh Sinead and offers her free hand to the twins silently she takes them from the room and I get up, go over to Ric and together we hold each other and cry for the daughter we have lost.

Three weeks later we have the go ahead to take Shobians body back to Bristol to be buried, as a family we want to move back there, we want to go back to the pace where we have happy memories of Shobian begin with us, we are extremely grateful and thankful to all the services that have supported us in Devon but our life is in Bristol and that’s where Shobian should be.

Two days after we arrive back in Bristol it is the day of the funeral and we are all highly emotional. As a tribute to Shobian we are wearing her favourite colours lilac and pink, Ric is in his usual suit but then again I cant imagine him in lilac and pink. We all leave together and walk behind the small coffin that contains Shobians body. The ceremony is short but covers all the best parts of her short but happy life, on my way out of the cemetery I recognise one the nurses from the hospice in which Shobian died. We chatted for a while and decided that we would go back and visit them sometime soon as we would like to see the tree they planted to commemorate Shobians time there. We walk out of the gates hand in hand and for the first time in here life Kealeigh Sinead says “mummy, Daddy” and comes over to us and puts her arms around mine and Ric’s legs, this is it, we have a new beginning, we wont ever forget our daughter or the memories she gave us but we have to continue for us and for the girls. Shobian is with the angels and they will look after her now, we have to look after each other.