23 06 2008

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.

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6 responses

3 08 2008

Thanks for the post

15 04 2009
top 5 posts. «

[…] 1. Blessed […]

2 09 2009
Judi Wheeldon

Thank you so much for sharing that. Sharing is important as you inform and possibly help someone else.

Hugs to Miles’

19 11 2009

i just wanted to say that seeing this page with these pictures of your beautiful son has given me hope that the beautiful baby girl i am expecting will have a chance in life. so thank you!

12 01 2010

I am so happy that the baby looks so healthy.

if you are pleased please read this my doughter is in a very bad condition than Miles.she was born with larg encephalocele at the back of her head .the surgen has closed this encephalocele on the 5th day this time my doughter looks well but after some days her head starts to swell.when i asked him why he didn’t make a shunt while he
closes her encephalocele he has no any good reason.
my doughter head by know is almost twice miles head on the photograph(mile’s) and it starts to rupture on both sides which sleeps on.these are the days that i can’t do any thing to help my doughter .my family and i are suffering a lot. the docter lives in capital city and he asks to much that i can’t aford.
i better wish i never came to this world.
if any one help me how to help my doughter I am very thank full

5 03 2010
Isrymar L

Workneth, I know what your goin through I know it hard but you guys have to be strong never give up, my precious angel born she was a live for 2 days and she die. but i put my eyes into the lord HE GOT THE ANSWER FOR US IS IMPOSIBLE BUT FOR HIM IS NOTHING JUST HAVE FAITH. HE CAN CHANGE YOUR LIFE AND YOUR DAUTHER. and if something haves he know the best for us. you just need to let your problems in his hands because he say in MATHEW, HE WILL BE WITH US THE REST OF OR LIFE , God is not a man to like, when he say something he do it. Have faith and it will be ok.
God Bless you!

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