Some days I am completely and utterly overwhelmed with how God has blessed us. I am so amazed by the miracle that my son is. I am so thankful that he was born in a time with the medical advancements that we have and that we live near one of the best pediatric Neurosurgeons in the country. We have been blessed beyond what I could explain by our friends, family and church family. People have done things for us we could have never even fathomed. God has used so many people and circumstances to provide for our needs in a time that we have been, well…very needy. I am also in awe at how well Miles is doing. He is such a little fighter. Any time a child is born with a birth defect, the incidence of that child having many more defects jumps dramatically. Miles was born with an encephalocele, which he had repaired at 2 1/2 months of age. But other than the encephalocele, as far as we know, he has no other defects. Here is a little more about hydrocephalus from the article: Management of Spina Bifida, Hydrocephalus and Shunts by Lynne C. Kramer, MD.
Hydrocephalus is defined as excess cerebrospinal fluid (CSF) accumulation in the head caused by disturbance of formation, flow, or absorption. The term stems from the Greek hydro (water) and cephali (head).
The incidence of infantile hydrocephalus is estimated at 3-5 cases per 1000 live births. An estimated 750,000 people have hydrocephalus, and 160,000 ventriculoperitoneal shunts are implanted each year worldwide. About 56,600 children and adolescents younger than 18 years have a shunt in place.In the 1940s, before shunting was established, children with hydrocephalus had a poor prognosis. Most patients were not offered treatment, and only 20% of children who did not undergo surgery for hydrocephalus reached adulthood. Furthermore, children who survived had a 50% chance of having permanent brain damage. Outcomes improved after the introduction of valved shunt systems in 1952 and after the development of silicone systems in the 1960s. Most children with hydrocephalus currently reach adulthood if the shunt is appropriately maintained. In a 20-year follow-up survey of children who received shunting in the 1970s, more than half of them graduated from mainstream education.
The patient and the doctor must have an ongoing commitment to manage the complications associated with shunting. Shunt complications can be divided into 3 categories: mechanical, infective, and overdrainage-related. As many as 80% of shunts develop mechanical complications at some stage, and one third to one half of these complications occur within the first year of shunt placement. An additional 15% of shunts fail in the second year, and 1-7% shunts per year fail after the second year. On average, each patient is likely to undergo 2-3 operations throughout childhood for shunt revision.
Miles the day he was born. Miles after his shunt surgery.
Miles at home at one month old. Miles in the hospital after his encephalocele repair.
Our miracle baby today at 5 months!
UPDATED: Here is Miles at 20 months old. He is now starting to talk and crawling all over the place. It is our goal for him to be walking by his 2nd Birthday.