At Barely a Year Old, Lucia is About to Have Surgery on Her Skull

According to a story from the Murray Valley Standard, Lucia’s parents Julie and Peter knew within weeks after her birth that something was wrong with their newborn baby’s head. Although they recognized that something was off early on, it took around eight months for doctors to do diagnose her with craniosynostosis.
In craniosynostosis, a baby’s skull begins to fuse together, and the fissures transform into bone earlier than they should. This changes the pattern of skull growth. At best, this can result in an unusual head shape and facial features if left untreated. In many cases the premature fusion does not allow for sufficient space for the infant’s rapidly growing brain. This can cause an increase in intercranial pressure that will keep the child from sleeping, eating, or seeing normally. In addition, the child’s mental development will be majorly impaired. The disease can often be part of a syndrome, but it is not in Lucia’s case. To learn more about this condition, click here.

At 13 months old, Lucia is preparing to have surgery in order for her skull to continue to expand. Ideally, the surgery would have happened earlier when her skull bones were more malleable. However, doctors were adamant that they should go forward with the procedure; Lucia would have a very difficult life without it. Her mother Julie has been talking to other young couples in the local community about the condition in order to raise awareness. The truth is that correcting the problem is easier the earlier it is discovered, although many surgeons wait to operate until at least six months of age, when the risk of blood loss is reduced. The family also were distressed by the lack of information about craniosynostosis when the diagnosis was made, and ideally doctors should have been able to recognize the problem faster than they did.

Julie has started to blog about her experience and also found some support from an Australian Facebook group of families that have had to deal with craniosynostosis. Julie also talked with another family nearby whose child had the condition. It is estimated that craniosynostosis is present in anywhere from 1 in 1,800 to 1 in 3,000 births.

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