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    SUPPORTING CHILDREN WITH CONGENITAL HEART DISEASE

    Sofia's Story

    Sofia Shah was just three years old when she became critically ill and in need of a new heart. Her mother Leah tells her story.


    Our Daughter Sofia was a healthy little three-year-old, and then in May 2009 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 wouldn’t eat much or walk and she had started grunting when she was breathing. This time the doctor just looked baffled and suggested I take her to A&E just to be sure.


    We didn’t rush in as didn’t think it was anything to worry about. Little did we know. The doctor and a nurse came and 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 was told they needed to put her to sleep so they could do more for her and give her some treatment. I gave Sofia cuddles until she finally fell asleep.


    Sofia in Hospital I was then told she had a condition called Dilated Cardio-myopathy - an infection 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. The doctor told me she would either recover slowly with treatment, not recover and need a heart transplant, or become so severely ill that she would sadly pass away.


    I 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.


    Unfortunately after a week or so Sofia started to deteriorate and one evening her monitor went berserk. They had put her into a coma type mode and we were told that the next 24 hours were crucial. Seeing her like that for the first time was frightening. She was white as a sheet and I thought she was dead. It was heart breaking. I was in despair but at the same time I was trying to stay focused.


    After this, the doctors took us a side again and told us that unfortunately they don’t think the treatment is working and that she is now becoming worse and that they had informed Great Ormond Street Hospital.


    On meeting the Transplant Nurse we were told all about heart transplant waiting lists and that Sofia would not survive waiting for long so they would want to fit her with an artificial (‘Berlin’) Heart which takes over the work of her heart to help it rest. After a few weeks Sofia had become well enough to travel and they transferred her to GOSH.


    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. 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 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.


    Sofia in HospitalShe was finally brought back to 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. 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.


    Learning the medication routine was daunting but we got used to it within time. Her legs had become so weak and fragile she found it hard to stand let alone walk. She had physio and slowly started to improve. Once we got the hang of the meds the doctors asked if we would like her to come and stay with us at the parent’s flats. After spending the weekend with us at the flat we were told we could finally take her home. We were overjoyed and couldn’t believe we could go. It was amazing.


    Sofia

    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 competed in the transplant Games 2010 in bath and we were so proud of her. She won Gold, Silver and Bronze – amazing - and she is going to compete again this year. It’s lovely, 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.


    Sofia today




    Sofia is now coming up to her second Heart anniversary and we spend this day as a family and think so fondly of the child who gave her life and of the family who we will forever hold deeply in our thoughts and hearts.

     

     


     

     

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