Sofia Johansson
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This Sofia, 3.5 years old
Our daughter Sofia was born in June, 1996 in Finland. She was born 3 weeks early with
esopageal atresia long gap, 10 cm missing and Tracheo/Laryngomalacia.
After the birth Sofia immediately was transferred to a "bigger" hospital, since they, by x-ray, found out that there was no connection with her stomach and since she had trouble breathing (stridor). I
didn't know what was wrong under my pregnancy, but they'd prepared me that something could be wrong with the baby because of all the fluid around the baby.
Sofia had an intubation-tube from her nose down the trachea to help her breathe instead of a tracheostomy tube at her first 5 months, because the doctors thought that it
wouldn't take that long before she could breathe on her own......and then they were also afraid of infections with the tracheostomy, because
they'd constructed a "spitfistula" from Sofia's upper end of esophagus out at her throat so when she
swallowed saliva, it ran out. (because at that time she still had no connection with her stomach, and without the fistula we should have been forced to suction her mouth from saliva very often)
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Sofia 5 months old
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Gisela and Sofia met for the first time.
1 month and 4 years old.
When Sofia was 5 1/2 months old they decided that she had to have the tracheostomy, because the nose-tube began to damage her vocal cords. So at the time she had her tracheostomy, we thought this was very
easy to take care of (compared with the nose tube) and she could come home.
When she was 11 months old, Sofia had another surgery. It was now time to build her eating tube. The method is called Gastric Tube
esophagoplasty, and the greater curvature of stomach is used to build the eating tube/ "esofagus". Sofia began to learn how to eat through her mouth when she was about 1 1/2 years old, and when she was about 2 1/2 years she eat all her food "the right way". We still mixes her food, because she
don't like pieces that much, but she's progressing. Biscuits, boiled egg and hot dogs? she has started to chew and she enjoys it very much.
Sofia is taking medication against reflux, and we don't think reflux is a problem for her.
Sofia's esophagus have been dilatated about 15 times.
Over the years we have been trying to decannulate Sofia several times, and the longest she has been without trache is about 2 weeks when she was 3 years old. After a few days Sofia had difficulties breathing, but she managed for almost 2 weeks before they had to put the trache back.
For us, the tracheostomy tube is safety, we don't know how to live without it... As Sofia herself said when we tried to take the tube away in March, 2000, "I want my trache back".
Sofia still sleeps in our bedroom, and we suction her about 3-5 times a day. (if she has a cold it could be up to 15 times) She often
coughs out the secretion herself or she will come to us and say "I have to be suctioned". In the days we have a speaking valve at her tube, and at night she has a vent (filter) which prevents the trachea from getting too "dry". We often use a monitor at nights, it feels safer that way, even if
Sofia's tracheostomy tube has never come out at home.
Sometimes we had trouble when changing her trache.....until she was about 1 years old it went rather good, but as she grew older she became very frightened of it, and we started to use pre-medication to "keep her calm". We always change the tube at the hospital with a doctor available, for safety and because we live only 5 minutes walk from our "little" hospital. Now when she is older, we change the tube without any medications, and she is very
reasonable. She lays down at her back in bed, and then we count to 3 before changing the tube.
A small problem for us is if the winters get too cold, Sofia can't be out that much, but fortunately we have had warm
winters since she was born....
Sofia speaks very well, she even sings.....though she didn't get her speaking valve until she was 1 1/2 years old, but kids learn very quickly.
Sofia goes to a Day care centre. She has her own carer who is trained by us and who also has been at the hospital for tube changes. One of
Sofia's friends at the Day care centre once asked her carer what it was that she had on her throat, and she explained to him and he said: Wow, I thought it was a camera....
In Finland, the children begin school when they are 7 years old, and our biggest dream is that Sofia could start school without trache, but if not......we will do our best to support her and just hope that the other children will understand and be kind to her...
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Sofia is taking a bubble-bath 4 years old
Sofia is mostly a healthy, happy and harmonic child who does most of the things her friends and sister does, and who really enjoys life in spite of her visits to the
hospital. She thinks it's okay to go there but she use to say: I don't want to go to the surgery-room, it smells bad in there...
Wishes from Inger Johansson, Sofia's mother, and the rest of the family:
Matte, Gisela and Sofia.
