Sara - posted on 02/18/2009 ( 7 moms have responded )
Hello, I am a mother to 3 sons. Our middle son, William, was born in Jan. of 2000. He is in the 3rd grade at a public school. Ironically all of his special needs are physical. His IQ is higher than most kids his age, he reads at a 6th grade level and is very witty. His body just cannot keep up with his mind. He is a great kid who has a very strong will...sometimes that is good considering his situation....and other times it gets him into a lot of trouble with mom and dad!! lol
He has multiple birth defects, and ironically I know of only one other person with the similar complex, known as OEIS Complex. It is very rare to have all of these birth defects together. To explain: Omphalocele: His liver and most of his intestines were on the outside of his body when he was born. Exstrophy: He has cloacal exstrophy which includes the bladder and sexual organs. Spina Bifida: Lypomyelocystocele: A fatty cyst on the bottom of his spine, it was skin covered and the nerve damage effects the use of his shin on down. He uses crutches and a wheelchair, but prefers to crawl...much to our dismay....and his, because he gets in trouble with us when he crawls. He does not have a shunt because hydrocephalus is rare with his form of spinal bifida. He has severe hip dysplasia and has had surgeries to start correcting it....will need more. He has a iliostomy bag which will be there for life and is also missing most of his colon and he does not have a rectum or a sphincter muscle, nor does he have any control with his urine. He has a peg tube but we haven't used it in years...they are afraid to remove it because it was so hard to find a port....his insides aren't exactly located where they should be. He didn't start to eat orally until he was 3 and before that we used NG tubes. We went through a stent of malnutrition too....he then had the disorder of pica...and chewed most of his fingers off ( the tips). Because of this three fingers on his left hand are now clubbed, and even though we found out why he was malnutritioned chewing his fingers has become a habit...one that we still try to break! The doctors found that his pancreas does not breakdown fats and proteins, so now he is on an enzyme, along with an iron supplement.
He has had a half dozen surgeries and has many more to come. He is little for his age weighing around 30 pounds and is about the height of a 3-4 year-old. Our youngest son, who is 7, towers over him now! We spent the first few years of our life in the hospital and now it's not as often. I don't push to get surgeries done unless it's absolutely needed. There is a surgery out now that could make him dry....not needing to wear pull-ups anymore. There is no risk for him to stay as he is (being wet), however, there is always a risk, whether it be small or big, to doing the surgery. Right now it doesn't bother us that he has to wear pull-ups (except for the cost - we just lost medicaid so now we have to pay for them...I am working on finding another outlet) so we decided that when he is of an age to make a decision he can make it for himself.
Being a mom of a disable child and having a family with a disable member can be difficult at times. I have a great husband and he is a lot of support. Our goal has and always will be to raise all of our children the same. They all get loved on, disciplined, are involved with activities and friends.
I am out there for anyone who may just need someone to chat with....I am especially looking for parents out there that may have some or all of the same birth defects that my son has. It is very rare. If you are interested in learning more about Wil, you may visit my blog at www.perfectwil.blogspot.com it has detailed information about our/his story and pictures too! I haven't updated it in awhile...I think it goes until age 3-4....I guess I will have to get on that!! Thanks for reading and I hope to hear from anyone who may have questions or just want to chat!!
Fort Wayne, Indiana