Spina Bifida and Lily
This precious little girl, Lily, is my twelfth grandchild. She was born with spina bifida. It is a birth defect of the spine. When her mother was just a few months along, she went to have a routine sonogram and to find out the sex of the baby. Instead she was told that the baby had an abnormality.
Although her parents were very sad, they wanted to keep the baby and raise her. We all love Lily so much, and are learning the best way to take care of her. So many people have helped our son and his family and we are so grateful. Also her brother and sisters, cousins, aunts and uncles are so supportive, and try to help Lily as she grows and needs extra help.
Spina bifida occurs during the first months of development in the womb. The spine and back bone do not close all the way. There are different stages of the disability. The condition ranges from mild to very severe. You can read more about spina bifida here.
In Lily's case, her back bone was outside of her back encased in a sac. She also had hydrocephalus (extra water on the brain), the Arnold-Chiari Malformation, and bilateral club feet. The opening in the spine started at the level L1 and was quite severe. She had an operation to close her spine when she was only a couple of days old. She also had a shunt put in her head when she was a week old to drain the extra fluid out of her head.
Lily is now over a year old. She cannot feel below her waist and cannot crawl but she can pull herself across the floor with her arms. At first she could only go backwards by pushing herself with her arms. It took her a while to get the idea of moving forward. She complains while she is pulling herself forward, but she can move quite easily now. Her mother has told me that recently she pulls herself all cross the kitchen floor as well as on the carpet. She is a very happy sweet baby. You can read more about our little Lily here.
My son and daughter-in-law are very involved with the Utah Spina Bifida Organization. They find comfort in meeting with other families who are also dealing with this disability. You can read about some of these wonderful individuals on their blog above. Some of these children and adults have amazing stories and have done very well despite their disabilities.
Little Lily has had physical therapy to help her strengthen her upper body which she uses to do everything. As you can see from the pictures, her feet were turned in quite badly when she was born. The doctors had to cut a little tendon on each leg so they could straighten out her feet. She then wore casts on her legs for several months. After that she was fit with braces and had to wear then all day and night for quite a while. Finally her feet had been corrected enough so that she only needed her braces on at night.
Most children with spina bifida have problems with their bowels and bladder. Because she has no feeling in her bottom half, she cannot void regularly and her parents must catheterize her several times daily.
Research is being done to determine what causes spina bifida. So far, they have discovered that a lack of folic acid in the diet of the pregnant mother may cause this abnormality. Folic acid is found in foods like egg yolks, broccoli, spinach, and oranges. They are also studying if chemicals or genes contribute to this disability.
Thanks for letting me share my beautiful granddaughter with you. I know many families live with children who have disabilities but with support and prayer, we can help them live a happy life.
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