Welcome to our little space on the net! This blog is just about our family life, and began as a way to keep family and friends updated on what was going on with my pregnancy with our first son, Gage. We've since added Evie to our family, and I continue to blog about family life, car seats, spina bifida, and anything else that catches my attention.

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Monday, July 2, 2007

From April 19, 2007

This is a post from my MySpace blog 3 days after we found out that Gage had spina bifida. We didn't know a whole lot then and had spent those 3 days looking stuff up and trying to get as much info as we could. I thought it was appropriate to post here.

Well, to start, Baby Fincher is a BOY! His name is Gage Anthony and we are very excited!

Let me start at the beginning. A few weeks ago I had a Quad Screen which is a test that looks for certain amounts of certain proteins in the mom's blood. Too high or too low can indicate a higher likelyhood of Down's Syndrome, Trisomy 18 (like Down's, but much more severe and I think always fatal), and spina bifida. After I got it done I was mad at myself for doing it because there is SUCH a high false + rate and I was afraid it would just be a cause for undue worry. Well, mine came back positive, although I didn't know what for. I went to a perinatologist for a Level 2 ultrasound on Monday April 16. It showed that my baby boy does have spina bifida. There is a "lesion" or opening low on his spine and will need surgery to cover the hole within 24 hours after he is born. This was quite a blow to us, and it was hard for us to be happy about the good news about baby being a boy when we were dealing with the fact that our child would be born with a potentially disabling condition.

I cried all afternoon Monday and all morning Tuesday. Tony called our parents Monday on the way home from the dr's office. I didn't want this to be some sort of family secret, like we were ashamed or something, so we called or emailed extended family and close friends as we could, including the members of our church.

The phone calls started after lunch Tuesday. I started out crying through most of each of them. Then I would cry at first and by the end of the conversation I was ok. By Tues. night I could hold a whole conversation without losing my composure. I went to work Wednesday and felt better still. As I talked to people and as I read more info, the sense that this was such a horrible, dire situation faded a bit. People who have family with spina bifida have come out of the woodworks with comforting stories of success in one way or another.

I know that my child is no less "fearfully and wonderfully made" than a "normal" child. God has blessed us with him and we are so thankful for that. We know that there will be challenges to face, but I am confident that those challenges will help us to grow spriritually, as a couple, and as a family. I am sure I will still have bad days. The thought that my baby will have to be taken from me and operated on in the first day of his life outside the womb is still heartbreaking to me, but we will get through it, with God's help. We have marveled at the fact that this baby could not be coming into a home better equipped to deal with his needs, since Tony is an RN and I am an occupational therapist!

I write this because I am not ashamed of what's going on with my baby and because we need all the prayers we can get! If you are so inclined, please pray for Gage and his health. Also pray for Tony and me that we can have peace about this and what is to come for us. I really appreciate every little prayer that goes up on our behalf!

Some quick facts about spina bifida:

Spina Bifida means cleft spine, which is an incomplete closure in the spinal column. In general, the three types of spina bifida (from mild to severe) are:

1. Spina Bifida Occulta: There is an opening in one or more of the vertebrae (bones) of the spinal column without apparent damage to the spinal cord.

2. Meningocele: The meninges, or protective covering around the spinal cord, has pushed out through the opening in the vertebrae in a sac called the "meningocele." However, the spinal cord remains intact. This form can be repaired with little or no damage to the nerve pathways.

3. Myelomeningocele: This is the most severe form of spina bifida, in which a portion of the spinal cord itself protrudes through the back. In some cases, sacs are covered with skin; in others, tissue and nerves are exposed. Generally, people use the terms "spina bifida" and "myelomeningocele" interchangeably.


© copyright 2001 American Medical Association

INCIDENCE

Approximately 40% of all Americans may have spina bifida occulta, but because most experience little or no symptoms, very few of them ever know that they have it. The other two types of spina bifida, meningocele and myelomeningocele, are known collectively as "spina bifida manifesta," and occur in approximately one out of every thousand births. Of these infants born with "spina bifida manifesta," about 4% have the meningocele form, while about 96% have myelomeningocele form.

CHARACTERISTICS

The effects of myelomeningocele, the most serious form of spina bifida, may include muscle weakness or paralysis below the area of the spine where the incomplete closure (or cleft) occurs, loss of sensation below the cleft, and loss of bowel and bladder control. In addition, fluid may build up and cause an accumulation of fluid in the brain (a condition known as hydrocephalus). A large percentage (70%-90%) of children born with myelomeningocele have hydrocephalus. Hydrocephalus is controlled by a surgical procedure called "shunting," which relieves the fluid buildup in the brain. If a drain (shunt) is not implanted, the pressure buildup can cause brain damage, seizures or blindness. Hydrocephalus may occur without spina bifida, but the two conditions often occur together.


So far, it seems that Gage has the first type, or spina bifida occulta. Nobody has used this term with us yet, but we have been told that there is not anything protruding through the opening right now, so that is what I assume.

2 comments:

Lucky Gem said...

Yay!! Welcome to bloggerland!

Ashley said...

Hey! I saw the link on Jana's blog. Welcome to land of blogs. It can get a little interesting sometimes! We have found that it is a great way to keep in touch with friends and family. I would love to add you to my links! Do you mind?