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A page dedicated to Tea Pekka and Maria Aarne are parents from Finland who have written their story for you all to read at Left Heart Matters. Click here for a picture of Tea I was very delighted to find Left Heart Matters on our new computer (a christmas present), because here in Finland we have no own association of HLHS patients (we belong to the association of heart children who have different kind of congenital or other heart diaseases). In Finland the treatment of HLHS children is a new thing. Norwood operations have been done since 1994. Before that time the survival of HLHS patients was impossible. Our third daughter Tea Elisa was born in the late Saturday evening on the 30th of September 1995. Her weigh was 4010g and she was 50cm tall. After her birth everything seemed to be allright. Tea's HLHS was diagnosed when she was 34 hours old, then her condition was allready very critical. She was moved from our hometown (Pori) to Helsinki (capital of Finland, distance 240km) to the Children's Hospital where all finish HLHS patients are taking care of. She had her first operation (Norwood I) in the age of 12 days. It was the tenth first-stage operation of a HLHS child in Finland. Only one other HLHS child (about a month older baby) was then alive. So Tea and that other baby were the only HLHS patients living in Finland in autumn 1995. After many difficulties, infections, breathing problems, feeding problems etc. she came home the first time on the 23th of November 1995 in the age of 8 weeks. The main problem at home was that she didn't have strength to eat enough. She was feeded by a tube (from nose to stomach). She also threw easily up her food. While eating or crying she overworked and swet easily. Taking daily medicines didn't couse any trouble. When Tea was 5 months old she had her second-stage operation (Norwood II and also her pulmonaly artery was enlarged) the day was the 28th of February 1996. It was the second second-stage operation of a HLHS patient in Finland. We stayed in hospital only 12 days and after this operation she was like a different baby. Her beautifulness was like before, but she became much stronger. She was able to eat enough and she started to grow more. She started talking in the age of 12 months and and walking when she was 18 months old. She also learned to sing, dance, draw etc. Tea was a very happy and cheerful child, she cried very rarely. Of course there were all the time medical problems available. She had tricuspid regurgitation and AV block (second degree). Fortunately these problems didn't worse her condition very much. We lived almost usual life until the autumn 1997 (including medical observation). We went to Helsinki on Tuesday the 30th of September 1997, it was Tea's second birthday. In the age of two years Tea was 82 cm tall and her weigh was 9 kg. We had selebrated her birthday at home two days earlier on Sunday. There was also a birthdayparty waiting for us when we arrived to the Children's Hospital (a cake, a present, balloons, singing etc.). Her third-stage operation was on Wednesday the first of October. It was so called TCPC (Fontan-type) with fenestration, also a plastia of tricuspid valve, enlargement of the pulmonary artery and she also got a pace-maker. The late moments of the operation were very critical and we almost lost her then, but she started to get better. Six days after the third-stage operation her circulation was stable and she was able to breathe herself without a respirator. Everything seemed to be fine. Everybody was pleased, not only the family, but also the nurses and doctors, because Tea was the first HLHS patient in Finland who had advanced to the third-stage operation. Next day (the seventh) she began to have difficulties in breathing and she needed a respirator again. She began to be tired and more sick day by day. She had pneumonia. There began to exist critical difficulties with oxidization and ventilation. Though the infection was under control it coused damage in circulation of lungs. Her condition was critical several days. Twenty days after the operation the doctors told us that she had no possibilities to survive. Because we had stayed by her side all the time we were able to see ourselves how the strength of her tiny body was dying down. We cried and we prayed, but no one could save her life. In the early morning on Thursday the 23th of October 1997 Tea died. I cannot descripe our sadness by words. Our home feels so empty without Tea, though we still have the older sisters, Miia (13 years) and Nella (10 years). It's important to understand that the value of life cannot be measured by time. We know this charming, innocent child has left an enourmous influense to our lives. We still have the love and the memories. Sometimes I feel very lonely with these thoughts of Tea's sickness and death. I would be very gratefull if someone could tell me of their own thoughts and experiences living through the death of a child. Here is some details about us :
HLHS child:
Family:
Writer Registered charity number: 1058735 |
