This week's story is introduced by Warrior Mum and midwife, Lesley Chan...
|Ellie and Mum Caroline|
I was born in an RAF camp in Wegberg Germany. We returned to England before I was one year-old. My dad was in the RAF so we moved around a little when I was very young. I was about 3 or 4 when he got posted to Waddington near my mum’s home town of Lincoln and there we stayed.
When I left school I didn’t have a clue what I wanted to do. I went to a tiny business college and learnt how to type and do office skills which helped me get a place on a Youth Training Scheme (YTS) at a local firm of Solicitors where I started as an office Junior, then receptionist and finally promoted to a secretary. I worked there for 2 years before moving on to another firm of local Solicitors. The legal office "community" were quite close-knit back then and I became friends and met up for lunch or drinks with some of them. One of them was Clair who worked at a practice over the road from me and one day when we arranged to meet up for drinks her brother came along.
|Stepping out in style|
This was Carl. We spent a lot of time together and soon started going out. I was 19 by then and Carl was 26. We quickly bought our first house and got married 17 June 1994.
We were together 23 years. We split up last year - my choice...lots of reasons. However we do still get on well and share our responsibilities together for our daughters.
M. Tell us about your two lovely daughters?
At the moment to boost her energy levelsI have taken her to a nutritionist and we have altered our diets and added mineral vitamin supplements. Yaz also rides which has helped her balance greatly. Think we have done a good job because despite all her little things Yaz is a happy funny cheeky loving beautiful young lady. It's been hard as school didn't give her much support so we've done it on our own. That coupled with the fact that when she was four and a half when Ellie was born.
|Yasmin with Dad|
|Ellie in Florida swimming with the dolphins|
Poor little Yaz went to school talking about her baby sister, expecting her Mummy or Daddy to collect her when school was over, but was picked up by a friend instead and her little life became a turmoil as did ours.
Ellie had a seizure immediately on being admitted to hospital and we spent a week and a half watching her being tested and having medication pumped into her. The Paediatric Consultant thought it was metabolic but her seizures were getting worse and worse and when Carl asked for an MRI scan the Consultant said "There's no need for that".
What I meant of course is that it could have been inoperable cancer or similar and my baby would die. However I did prepare for the worst. Carl was always more positive but Ellie's seizures were getting worse and worse. The concoction of medications pumped into our baby was horrendous. We were desperate to rid her of this Demon.
We all went home for two or three days over Christmas. It was difficult trying to have a normal family time whilst in between giving my tiny baby rectal diazepam. We were rushed by ambulance back to Queens at Nottingham on Boxing day. Dr Chow had worked hard to try to manage the seizures but it wasn't happening. I never left Ellie's side and like lots of parents with a very sick child, effectively became her nurse.
Dr Chow said she had a good friend and colleague who was based at Birmingham Children's Hospital. He was the Consultant Neurologist there and Mr Walsh was the surgeon. We had a choice. Birmingham or Great Ormond Street. We chose Birmingham which was almost 80 miles away from home.
M. How was Yaz coping when you were at the hospital with Ellie?
Yaz was really struggling with our family being torn apart. We did spend odd days at home and spent precious time with Yaz but Ellie's seizures were so unmanageable and frequent we were often rushed back to hospital by ambulance. Dr Chow arranged for us to be transferred to Birmingham whilst Carl came later in the car stressed and agitated as he didn't know what was happening or where he was going.
Poor Yaz was again left behind.
It was incredibly hard to see all the poorly children on the ward and we actually had a child next to us die. It was too much to bear. I never left Ellie's side wondering how much more she could take. Her little body was bloated and her moments of clarity were now none existent. Mr Walsh had never operated on a child as young as Ellie. We were given the choice to wait a little but it was so dire we said go ahead. Our baby was lucky in the fact that her seizure were not generalised. They were definitely coming from the point of her front right lobe. It was decided on 25th February 2004 that she was to have a right hand haemispherectomy to disconnect and partially remove some brain. They were hopeful it may even stop the seizures. Ellis was just three and a half months old.
|Ellie in hospital|
This sounds terrible but as Ellie was seizing pretty much all the time, whatever happened it would release her from her pain and suffering. All sorts of thoughts rushing through my head not least what are we going to tell Yasmin. The Staff Nurse told us there was no parents room at the hospital so it was up to us what we wanted to do. I believe she said something like come back at 4pm. It was about 8.30 in the morning. We were told to keep our phones on but they would not call unless there was a problem. Well I just wanted to hide from the world whereas Carl was immensely strong and said we should go shopping. To the Bullring in centre of Birmingham.
I wanted to sit down every few feet but Carl kept me going. My phone rang at about 1.30pm and I swear I thought I would keel over. It was Linda a cousin of Carl's, asking how things were. We were looking at Christening outfits for the girls ...not my idea but like I say Carl was keeping me buoyant. It was a very surreal day in our lives...for me it almost felt like another labour but without the physical pain except I had pain in my heart and immense worry. Anyway, we made it back to the hospital and there was no news. We waited about another two and a half hours. Mr Walsh came in and my goodness he looked ashen. He must have been worn out. He said its done and all went well. He explained that the brain is like a jelly at this age and very maleable. He could not be certain but he felt it had gone very well and that Eloise was in ICU and we could go and see her.
Well the tables turned immediately on seeing Ellie. Carl was very unnerved and his confidence was knocked. Our little baby was screaming and had a huge bandage and so many tubes coming out of her it seemed impossible to get close to her. One nurse came to us and said we cannot calm her and she had had maximum dose of morphine and they could do no more. I knew at that point that Ellie was going to survive. I asked if I could hold her. The Staff looked a little shocked but I waded through the tubes and held Ellie, who looked like a little screaming wobbly jelly and I told her I was sorry but that she was going to be all right. It did calm her a little but we all thought it was probably the morphine. It made her very agitated when they topped it up. The next couple of days were hard but the tubes and drains gradually came away.
Mr Walsh thought Ellie may need a shunt fitted but she defied that. The professionals also said they thought as her right hand brain had been disconnected and some removed that Ellie may appear like a stroke victim and be unable to move her left hand side. Ellie defied that too - able immediately to move all four limbs. Amazing. I was just in awe of Ellie and her resilience and zest for life. I was breastfeeding her and had to express but after just a week or so I was back feeding her.
Ellie was amazing going from strength to strength and no sign of any seizures at all. The doctors were so pleased and said that the longer she went without the seizures the greater chance she would have of being seizure and medication free. About 3 weeks after surgery Ellie had just been seen by the doctor when she took a deep breath and turned blue. I panicked and blew gently in her face to make her breathe. She had a breathe but also had a seizure.
The demons were back.
I never left Ellie's side except to go home for the odd few days.
It was sporadic. We were trying now to regulate the seizures with medication. Once Ellie had had that first seizure, between March and May 2004 her seizures got worse and worse. We had loads more tests umbilatory ecgs to try and establish where these seizures were coming from and whether they were general seizures or specific. Our worst fears on the results were that although they were still mainly "sparking" from a small piece of brain still linked from behind her right eye/eyebrow, it was also damage that had been caused probably from previous seizures and scarring on the left side of the brain. Mr Walsh said he would have to do further tests before he could consider MORE surgery. MORE surgery? Oh my goodness. I could not bear it. The thought of my baby going through that trauma once more? What were the alternatives? Mr Walsh after lots and lots of tests and meetings came back to us with Dr Philip and say resurgent would be carried out. At this point Ellie was back up to 25-30 sometimes more seizures a day. Again clusters and very debilitating. It was like watching someone press the reset button on my now 6 month old baby and Ellie would forget how to do basic things like feed ...smile... it broke our hearts. Yaz talked of her baby sister all the time but had been without her or me more than she had seen us. That breaks my heart and I think about her trauma too, often. Not a lot we could do about it. Many parents make these sorts of decisions all the time...you have to do what you think is best at the time. I knew if I were to help Eloise I could not leave her side. I hardly slept. Carl drove back and forth so many times to Birmingham from Lincoln and back again. I do believe if I hadn't stayed with Ellie things may have been so different. Don't get me wrong for the main her care was second to none and I feel very privileged for Ellie to have such great nhs care but there were sometimes I thought "if I had not been here...." I shudder to think. Anyway. On the 19 May 2004 Ellie went for resurgery to remove as much as the right brain as possible.
She started her recovery and everything was going very well until she became unwell with a diarrhea and vomitting bug on the ward. This was about a week or so after her operation. It was horrendous.
My baby was so ill. I remember the nurse and I changing her sheets six times in an hour. Also, again I did not leave her side and so pleased I did not as one night at change of nurses shifts Ellie was so sick as she laid on her back and so weak she could not turn over and nearly choked to death on her own vomit. I screamed for a nurse but they were in changeover talk so no-one heard me. I picked Ellie up as best I could and she coughed it all out thank goodness. I think that was one of my lowest nights. I remember being really angry and I could not even talk to the nurses. There was a lovely nurse...a larger than life Caribbean lady called Dee and she said "What is wrong with you, girl?"... I wanted to pour out all my anger but did not. It wasn't her fault but I never did ask much of the nurses while Ellie was in hospital. I nursed Ellie as best I could myself. I felt cross that one of the only times on the ward I needed them they weren't there for Ellie. Anyway after that they put me and my baby in isolation.
It was an incredibly lonely time.
No-one could tell me why my baby was so sick and we were feeding her through a tube through her nose. There were no signs of any seizures but Ellie was incredibly poorly. I forbade Carl or Yaz to come as Ellie was really struggling. As the weeks went by I nursed Ellie very much on my own and after 3 weeks started to show some improvement. A nurse came in one day and said to me "Oh is Ellie getting over her superbug now?" I was gobsmacked. A superbug? I thought how much more can Ellie take? Anyway. I asked if Eloise's silk nasal tube could be changed and it was arranged. Two nurses came in and took the old one out. There was so much coiled in her tiny stomach and it looked like it was starting to rot...It was disgusting. The nurses said it should have been changed earlier. A new one was fitted and Ellie quickly improved.
I got Ellie out of the hospital at every opportunity. We walked and walked the canal and riverbank and streets of Birmingham to get fresh air. I would be gone for hours but no-one really noticed...which was good. It was like breakout!
It took her about 6 weeks to recover and it was such a relief when she was discharged; we could finally go home. Now the real work to aide Ellie's recovery could begin. We had not seen any seizures at this point so all was going well. I had seen some physiotherapists and play workers in the hospital so that had given me some pointers.
At home it felt weird without support. Felt strange to be a family at first. Gradually we put the pieces of our lives back into place and carried on. We quickly had I put of an amazing Community Nurse to whom I owe so much for her time and patience.
Gill, a physiotherapist was put in place and was top of her field. That first time she saw Ellie - laid on her back - head fixed to the right staring. Ellie could not move at all. She was 7 months old and could do nothing.
|Yaz and Ellie|
After a few visits Gill tentatively asked about Yasmin. We talked about her balance and concentration issues. GILL very kindly took Yasmin under her wing and did physio with Yasmin at her school. If it was not for Gill noticing Yaz's difficulties we would probably not have got the help she needed.
M. Mothering two children with special needs must have been exhausting.
We all worked tirelessly and it was hard. I remember thinking what is the point? That sounds terrible but when you try day after day and week after week and there appears no change and not looking likely of things changing...I would get out of
|Ellie with Mum|
Then there were little absences and these led on to myoclonic seizures. However, Dr Philip at Birmingham was keeping a close eye on these and we managed to find medication that seemed to control the seizures reasonably well. They seemed to occur mainly during the night and it was quite distressing. My little girl would often scream out but they only lasted maybe 30 seconds. The fit would often leave her bouncing and full of energy and not apparently needing the sleep that the rest of the family so very much needed. This can be true of Eloise today. Even at 10 years old Ellie can bounce around for hours but her seizures last maybe between 10 and 30 seconds. However there are other nights where Ellie sleeps through but it took years for that to happen.
My children's lives had never been "textbook" so it was a great learning experience for me also. I tried my best and with the help and guidance of these special people, Yaz and Ellie began to thrive.
M. As much as you loved your daughters did you feel trapped at home?
There was a time or two I thought we would never venture out and wondered how life would be but the Health visitor got Ellie and I out to a music group so we were mixing with others. She also told me about this fantastic creche for children with additional needs and asked would I like to look around it? I did, was totally impressed and Ellie began to attend there Wednesday and Friday mornings. The team of 4 staff there were amazing. Ellie was going from strength to strength though still far behind her peers and when I look back I think I was beginning to run out of steam.
M. How did it feel being out in the big wide world again?
Great to meet other families too that didn't stare and feel you as a parent were being judged. That is a difficult thing to come to terms with when you have a child / children with additional needs. Not only do you have to get to grips with their condition but also how others react. It was only about 5 weeks after we had been discharged from Birmingham QMC that we went on holiday to Cornwall. We went to the Eden Project one day. Eloise had had major brain surgery so her hair had been shaved and her scar was very very prominent. We were sitting on a seat and a lady passed us. She looked at Eloise and stared as she walked by. Then her gaze turned to me and I actually believe she thought I had perhaps hurt Eloise as her stare looked angry and she kept looking distasteful as she walked away. I felt so very upset but was too timid to say anything. People who know me would say I was a different person then. Very timid and quite shy. Not so now. I have learnt to be that person who will stand up and say what I feel ..fight for my girls corner when I need to.
M. Did you consider returning to work?
I had not returned to my job as Facilities Management Assistant at our local Council as Ellie's needs were too great. Let's face it, looking after a disabled child is a full time job in itself. With so many appointments to attend. My goodness there was no time to work. .
|Yaz and Ellie|
Ellie's left side is weaker than her right and she does not use her left arm or hand at all. We did try physio and still do encourage her left side but I feel Ellie chooses not to use her left hand and is very dexterous with her right hand ... I often call her Mrs Tickle from the Mr Men she loves.
Ellie's seizures have been a little up and down over the years so far...but I feel have been worse during growth spurts or illnesses such as a common cold. Mostly seizing during the night but controlled with medication morning and night ... no more intervening with diazepam or likes. Thank goodness.
Ellie is a very cheerful bubbly cheeky little girl. She used to chatter a lot...babbling really. However about 4 years ago she had a problem with her left leg. I got a call from school saying they thought she had a green stick fracture of her left leg. It was devastating news. Ellie's walking had been going so very well. She had a vocabulary of about 43-46 words that were regularly spoken.
It was Christmastime.
It all stopped.
M. That must have been devastating after all you had been through.
It was so hard. Ellie shut down. It broke my heart. It was like she had lost her will and drive to push forward. She started to suck her thumb. It seemed all she could do to soothe herself.
It took a good 3-4 months to get her back on her feet. It wasn't a green stick fracture but no-one really knew what had happened. Again we all pushed forward but Ellie's words didn't return and she didn't seem so bubbly for a long while. Her seizures got worse and we even talked about the ketogenic diet. However Dr Phillip changed Eloise's medication to what she is on now and at least her seizures settled.
Ellie has been at the same school with the same staff for 7 years, which has been a great help. She slowly began to walk again although her confidence was knocked. She bit her right hand through frustration and still does today.
|Yaz and Ellie at Lincoln Cathedral|
Sadly, her speech has never fully returned. She says a few words but I feel it is her choosing to not speak.
Life for Carl and I was difficult. Carl worked shifts and wasn't there a lot. Ellie was getting taller and heavier and life was a struggle.
M. How do you manage to lift Ellie when her leg is in plaster cast?
She and I had to sleep on the floor downstairs. The lounge became our bathroom, bedroom and dining room for five long weeks. Then we managed to get a lighter weight plaster fitted, which made life a bit easier. However Ellie's left side was compromised again. Getting in the car was almost impossible. School were brilliant as always. Good job Ellie could go to school. She was so sick of my company at home and it gave me a break for a few hours. However, everything has a knock on effect and when her pot was removed she had a pressure sore on her heel. This took another eight weeks to heal..
|Ellie after her 15th knee dislocation|
Yaz helped making cups of tea. My older daughter has really struggled this last year.... I think it took her back to darker times. Yaz hates to hear her younger sister scream. Ellie's knee has dislocated 15 times now and it's so upsetting to hear her cry out in pain. We are under an amazing consultant at Nottingham who, and quite rightly so, is reluctant to operate as it's such an invasive procedure on an already weak left leg. So we wait.
But there have been some good times. We had the most beautiful holiday gifted to us by Wish Upon A Star in October 2012 to swim with the dolphins in Florida. We also went to Disneyworld and the Warner Studios. Both Yasmin and Ellie had the time of their lives. It warmed our hearts to see them having such a great time.
How is life today?
Life is much easier...if there is such a thing....Ellie has been saying a few words again recently and although her naughty knee rears its ugly head occasionally we are managing it. Ellie is going for an assessment to hopefully get a communication aid at school. Hopefully it will help with her frustrations. Yasmin has had two exams with the help of a, scribe and extra time .... I know she will achieve all she wants in her life. We are all very positive and life is good. You can always find me with my girls ...or walking our dog Kipper who is our little Angel.
Caroline, thank you for sharing your story.