Alexandra's story, Sweden


At first

Eight years ago, Alexandra’s birth caused a lot of anxiety. She was born with Spina Bifida. Her mother’s biggest fear at the time was that Alexandra would have to use a wheelchair for the rest of her life. Nowadays she doesn’t think much of it. The wheelchair is only a tool for moving about.

When Alexandra was three days old she needed a shunt operation, because she had Hydrocephalus. There were some complications afterwards and during a second operation she received a new shunt. To this day she still has the same one and the doctor told her she can have it for many years to come.
 
Getting a grip 

After a month in hospital Alexandra and her family went home. There was a new way of life in store for them. An everyday struggle mixed with everlasting joy over the new family member, interrupted by a great number of visits to the hospital. The most acute stage had passed but there were more problems, like allergies, incontinence and constipation. Today Alexandra has got her grip on these conditions with the help of medication and clean intermittent catheterization. She is able to walk, but needs braces. Sometimes she uses a wheelchair and on occasions a walking chair. She waddles a bit when she moves but her speed is high at home in the family flat.
 
Integration

Alexandra was integrated in an ordinary day care center with an extra resource person to assist her when she was younger. Now she goes to school in her second primary year in a bilingual class with tuition in Swedish and English. It is a mainstream school across the street from their home. Alexandra walks or wheels there. Never did her mother think of her daughter as being a financial burden. In a welfare society such as Sweden there are civil rights like receiving the best possible medical care, medicines and professional help. Psysiotherapy, speech therapy, special tuition and other types of support are provided in accordance with the needs of the child. There is a well-structured set-up around the individual.
 
Healthcare

Healthcare is not totally free of charge, but the costs are low and affordable for everyone. On top of this there are monthly cash allocations to families who have children with special needs. These allowances are not depending on the family income but are totally due to the medical and psycho-social needs of the child. Technical aids and gear for the  toilet situation are free, because they are preconditions for living.

The worries of Sofia were more on an existential level combined with lack of knowledge of life conditions for people with disabilities.
 
Follow-up care

In Sweden, there is coordinated care with different teams regionally and locally all over the country. Medical care is available in all university hospitals for children with spina bifida and hydrocephalus, training and psycho-social support are offered by habilitation teams in the regions and sometimes in the local communities.
For Sofia the terminology of the information she received after Alexandra's birth was too complicated. She found it difficult to understand what the experts were saying. Yet, early on she took an important decision. As a parent she learnt to seek knowledge herself and to always have the courage to demand more in-depth information and question what she was told. She still maintains this attitude.

Alexandra's working memory can cause difficulties sometimes, but the exact reason for this is hard to tell. What is known though is that she will become shorter than average height, possibly no more than around 150 cm as an adult. A year ago she went through surgery to straighten her feet. Before the surgery her left foot was very twisted. Now she can use one foot to stand on and she walks a lot better with her braces.
 
Parent support group

Last year the Ekerows travelled with a Spina Bifida family group to a ski resort called Åre in northern Sweden. RBU, an umbrella organization for families who have children with mobility challenges, have a Spina Bifida section, who organized this one-week-trip. In Åre Alexandra could sit-ski and her older brother had the opportunity of meeting other young people with brothers and sisters who have Spina Bifida. This journey opened a whole new world to Sofia through the contacts with other families. It was like a miracle to meet other people with the same kind of challenges. It helped her to realize she was not alone.
 
Today Sofia is quite another sort of mother than she was a few years ago. She is much more relaxed and confident. She is very grateful to the doctor who told her never to forget that she is Alexandra’s mother and Alexandra is her child. She will always need the help of doctors and specialists, who will have opinions and views on a lot of things that concern Alexandra, but in the end Sofia knows her child better than anyone. She believes that even though Spina Bifida can not be repaired, everything is possible, only in different manners. As a six-year-old boy once replied to her, when she explained to him about Alexandra’s condition, ”Well, things happen sometimes and it’s not the end of the world.”
 
 
 

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