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Sofia Allarakha-Bapushah
Heart Transplant 15th July 2009

Our Daughter Sofia was a healthy little three year old. When suddenly she became ill. She seemed to be forever having a cold and cough and after many trips to the doctors we were told she may have asthma. We were advised to try an inhaler for a few weeks and to come back then to see how things are. I felt awful like we had been wasting their time, being an over protective mother.
Just two days later she started to get worse. She was tired all the time and didn’t seem to have much energy when awake. After a day or so she perked up a little so I allowed her to go to nursery just for a couple of hours and they said she seemed fine. The following day she got worse again, only this time she wouldn’t eat much or walk and she had started grunting when she was breathing. I had no idea. Didn’t even think for a moment it could be anything serious. I didn’t listen to the doctor and went on my own instincts and asked to see a different doctor. This time the doctor just looked baffled and suggested I take her to A&E just to be sure.
I took her home and called my friend. We didn’t rush in as didn’t think it was anything to worry about. Little did we know. I was home alone with my husband working some miles away and my parents were away too.
We took her in around 3pm and were seen first by a nurse. Still not alarmed we just sat in the waiting room and waited to be seen in turn by the doctor. When the doctor saw her he seemed a little worried. He did an ecg and told me he was worried it may be her Heart. I didn’t know what to think but kept a level head for Sofia. He asked us to go to the x-ray department and while we were waiting after the x-ray for someone to call us the doctor and a nurse came and found us with concerned faces. They then told me she has what they think is a heart condition and that we need to go to the Intensive Care Unit to be examined more closely. I still wasn’t too alarmed as thought it could be something trivial.
We were first taken to the Echo room for an examination. Sofia was getting very tired at this point and I was starting to get edgy myself. Finally a bed was available and we were taken to the Intensive Care Unit. I had no idea what to expect and from that moment on things started to show light and I started to worry.
Sofia was at this point very tired and the doctors were all around us talking about what was happening to each other and the nurses were doing their best to keep me calm. I was then asked to sit on the bed so Sofia could lean on me for a cuddle to keep her calm. I was then told they needed to put her to sleep so they could do more for her and give her some treatment. I had no idea what was going to happen but did as I was asked. I gave Sofia cuddles until she finally fell asleep. She was then led on the bed and the doctors asked if they could have a talk with me.
My friend was with me at this time and we were taken into a room. I was then told she had a condition called Dilated Cardiomyopathy and they explained that this is an infection to the Heart which causes the Heart to dilate in size. My mind was in a whirl. I had never heard of this before. They told me it is quite often caused by a general common cold which knocks the immune system and then more infections such as slap cheek causes it to damage the Heart. The doctor told me there were three different ways things could go. She was being given treatment intravenously to help the infection in the Heart and that she would become well slowly with this. This could take several weeks. If she did not get better with treatment she would then become in more danger and would not be able to live unless she has a Heart Transplant. This is very serious and we could lose her while either waiting for a donor or with the Transplant not being a success. She would become so severely ill that she will not recover and will sadly pass away.
Well in my eyes neither of the last two options were not an option to me and I stayed focused on thinking she will get better with treatment. I had phoned my husband before we went in and now I had to make the call to him to tell him the news. I felt sick and took some time to say it. I told him not to worry and to get some sleep and travel back to see us in the morning. I then had to call my parents. They were very concerned as you can imagine but I did my best to reassure them and for them to come in a few days after everything had started to settle.
I then went back into the Intensive Care Unit and burst into tears as soon as I saw her. She was now asleep with machines attached to her and they seemed to be everywhere. She looked so delicate and fragile. I could not believe what was happening. I just didn’t understand and as most people do, you think why me, why her. This sort of thing only happens to other people, not us. We had never had anything like this in our family before so I was in an alien world and didn’t know what to do.
My friend then stayed with me for a little while and then by eleven my husband walked through the door. I was angry at him for travelling when he was so tired but I was so glad to see him.
I tried to explain everything but I was starting to panic so asked for the doctors to talk to him with me. So they could explain better.
That night we stayed at the hospital in the parent’s room. Not that we slept much.
The following day we phoned or sent messages to all our friends and family to tell them our news. That was tough but we got through it.
Days seemed to go by so fast and we were waiting on results for improvement every day. Unfortunately after a week or so Sofia started to deteriorate and one evening while the doctor was doing his rounds Sofia’s monitor went berserk and she was in dangerous levels.
She was taken to another bed space and put onto a different ventilator and they put her on a cooling mat to drop her temperature. This ventilator was called an oscillator and it worked on what seemed like a vibration mode sending vibrations through her whole body. Seeing her like that for the first time was frightening. She was white as a sheet and I thought she was dead. We were told they had put her into a coma type mode and that the next 24 hours were crucial. She may not come out of this and if she does she may have brain damage. This unfortunately happened to be the first time my sisters had got up the courage to come see her. It was awful. I sat by her side and didn’t want to leave. My dad had a talk to her and told her she was to be brave and come back to us well. It was heart breaking. I was in despair but at the same time I was trying to stayed focused and keep everyone else at ease.
After this the doctors took us a side again and told us that unfortunately they don’t think the treatment was working and that she is now becoming worse and that they had informed Great Ormond Street Hospital and that we may need to go speak to them about her going onto the Heart Donor List.
Within a few days Sofia started to improve and they brought her out of sedation and off the cooling mat. She spent a few days here and there back on the mat and we were finally asked to go and visit the transplant Team in GOSH.
Me my husband and my father went to see them. We were not ready for what we were told.
With meeting the Transplant Nurse we were told all about donor waiting lists and that Sofia would not survive waiting for too long so they would want to fit her with a Berlin Heart, an artificial Heart which takes over the work of her heart to help it rest, giving her more life while living in hospital waiting for a donor. This I thought yes we can handle or yes we will handle for Sofia, anything to make her well. But the following news we were not prepared for. She explained to us how a Heart Transplant is not a cure, that it is to help prolong her life not curing her. I didn’t understand, I’d never heard of this before. I then asked the question, ‘how long?’ I was not prepared for the answer ‘average life expectancy is 15years’. She explained how over the years medical science had improved and was still improving and that only twenty years ago when they did the first Heart Transplant on a child that those first children only lived day’s, months and that now some children after transplant live years. She explained that it will be a tough road and that some children are lucky and don’t have too many problems and that others go through more. This they can never tell. I was beside myself. She said that they cannot do any of this without our consent. I didn’t know what to think. My husband was always very positive and made me strong. I had all sorts going through my head. The main one being, if I let her have one, will she hate me in years to come for putting her through this not knowing how long we would have.



We had great help from all the nurses and after a few weeks Sofia had become well enough to travel. They transferred her to GOSH and we moved ourselves to the parent’s accommodation.
The following day Sofia was settling in. She was still sedated and they were carrying out tests for themselves. We were told that they wanted to take her to theatre to have the Berlin Heart fitted the very next morning. Everything seemed to be moving so fast. Sofia spent 6 hours in surgery and finally after 7 hours we were allowed to go see her. It was awful, we didn’t know what to expect. After giving her kisses and saying goodnight we went off to bed to get ready to face the future we had living at the Hospital and waiting for a donor. We were told we could be waiting as long as nine months.
The following morning at 8am the phone rang. I shot out of bed and when I heard the nurse’s voice my stomach turned. I was waiting for some awful news. I couldn’t believe it. She was telling me a donor had been offered and that they had been working on sorting paperwork out etc all night and that the surgeon was on his way there to collect the Heart. My heart skipped a beat and then I got a sickening feeling. Someone had lost their precious child. How could this happen, it felt so wrong. I so wanted for Sofia to have a new Heart but the consequences of it seemed so hard. I cried tears of joy and tears of sadness. Such a mixed emotion which is so hard to explain.
I told my husband immediately and we all went in to give her a kiss before she went in. She hadn’t even woken as yet from having the Berlin Heart fitted less than twelve hours before. We then had a long wait ahead of us.
9 hours later we got a call to say she was coming out of surgery and that it was a success. That we could go see her in around thirty minutes. We rushed to see her and when we arrived we were told she had not come back yet, we then waited for a nurse to explain and after some while we were told her new heart was swollen slightly and that they were unable to close her chest and that it would remain open for a few days. She was finally brought back to the ward and we were able to see her. She looked so pale and I was scared. She seemed too frail to survive. I wished and wished all would be ok.
 She remained sedated for the following days while her chest was still open and then they took her back into surgery to close it. This was a success too and from then on we were on an uphill to recovery.
Every day she got just that little bit stronger and finally the day came when they were able to take her off her ventilator. It was amazing, I cried so much. She couldn’t talk but tried, but just to see her beautiful face without tapes and tubes was amazing. Day by day things were removed until finally she only had one canella attached with meds.
As time went on they tried to wean her off some of her medications but she struggled and started to hallucinate. This took some time and was not very nice to watch but she got through it and with help from the specialist she improved more and more every day.
Finally it was time for us to learn how to give her medications and we knew once we were ok with this and she was able to start walking we could go home. Learning the medication routine was daunting but we got used to it within time. Her walking however wasn’t so good. Her legs had become so weak and fragile she found it hard to stand let alone walk. She had physiotherapy and slowly started to improve.
Once we got the hang of the meds the doctors asked if we would like her to come stay with us at the parent’s flats. It was amazing. She wasn’t able to walk much, just a few steps but it was great.
After spending the weekend with us at the flat we were told we could finally take her home. We were overjoyed. Couldn’t believe we could go. It was amazing.
Being home she just grew stronger and stronger and we have grown stronger and stronger as a family. Living life one day at a time and looking forward to the future trying to think positively and giving her all we can of a normal life.
Sofia has done amazingly since her transplant. She is now in school and enjoying every day. She loves spending time with her friends and family. She’s a right little character. Full of mischief just like any other little girl.
She attended and competed in the transplant Games 2010 in bath , Belfast & Medway and we were so proud of her. It’s a lovely time, giving everyone a chance to meet other transplant children and adults and their families, and also to meet some of the amazing donor families who have helped so many like us.



 

3rd March 2014
Recipient of the Day.
Neil Capener.
"Transplant has given me the chance to live and be there for those that need me."
Neil had a Double Lung Transplant 2012 due to Cystic Fibrosis.
He enjoys playing golf and is a very keen fish keeper.

 


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