My daughter Amelia Grace, was born on January 28, 2009 with a previously undiagnosed neural tube defect called an encephalocele. I’ll save your poor, tired fingers the frantic Googling and your spell check the confusion and give you the barest lesson in early fetal development that I can without boring you silly.

Sometime during her very early life, when it was still measured in days, something went awry and her skull malformed when the neural tube closed during days 18-24. The neural tube folds up like a straw to form the spinal cord and the brain and a neural tube defect can form anywhere along that tube.

There are two types of neural tube defects: open and closed. Open, as you might gather, would mean that the contents of the delicate spinal cord are exposed through the bones at birth, like spina bifida, and are more common.

Closed neural tube defects–those covered by skin–are much more rare and undetectable by any of the blood screening tests during pregnancy because they are covered by skin.

Open neural tube defects are regularly detected during an amniocentesis, as an Maternal Serum Alpha Fetoprotein (MSAFP) elevation. Other times they’re detected during ultrasound examination during pregnancy.

My daughter’s neural tube defect occurred on the back of her head, creating what was called a posterior (meaning back of her head) encephalocele. That’s a fancy way of saying that a part of her brain developed outside of her head. It was a relatively small encephalocele, and it somehow went undetected.

Her first weeks of life were a roller coaster that I still cannot comprehend.

At three weeks of age, my eight-pound ass-kicking infant daughter went under the knife and kicked neurosurgery in the balls and showed that encephalocele who was boss. SHE was.

The full story here, here, here, here, here, here, here, and here.

My daughter lives. So many do not.

While it’s a rare birth defect, occurring in only about one in every 1,000 births, they’re not widely understood, although all women of childbearing age are recommended to take 400 micrograms of daily folic acid as it has been shown to reduce the instance of neural tube defects.

These are the numbers:

Encephaloceles are a prominent cause of spontaneous abortions before 20 weeks.

An encephalocele reduces the likelihood of a live birth to 21%.

Only half of those 21% survive.

75% of those survivors have varying degrees of mental retardation, the severity of defects higher for those who have the brain herniation on the back of the skull.

My daughter lives. My daughter who is monitored closely by every government agency you can think of and then some; she tests at or above average. In her short life, she has done more than I have in my 29 years around the sun. My Amelia has touched so many.

And that is why I am proud to be a March of Dimes Mom. Together, Amelia and I, we’re going to help others who need it. We’re going to give our voices to those who cannot.

You can to. Please join me.

Join the March Of Dimes Advocacy List to email our elected officials about laws that will affect our babies.

Donate your used cell phone. The March of Dimes offers prepaid downloadable shipping labels.

Certainly you can donate in honor or in memorium.

You can start a virtual band to honor a child.

You can do form a team and March for Babies.

Volunteer with the March of Dimes.

If you’d like to add the name of a baby who has passed to my Wall of Remembrance, please, leave me a comment or send me an email to becky@dwink.net.

For my friends who have lost babies, I send you here, to A Glow In The Woods. Please go. They can help.

Now I Lay Me Down To Sleep is a non-profit network of volunteer photographers who will come and provide a free heirloom photography session for stillborn babies. You can donate your services, your time, and your awareness.

Many NICU’s accept donations of small clothing, blankets and hats, but be sure to call ahead to make certain and check to see what their protocol is.

You can donate here to the Ronald McDonald house, who for no cost to the parents, will put a roof over the head of a family of a child who is in the hospital. An amazing charity. Thank you, Rachel.

Operation Smile is another great way to get involved, thank you Liz.

While there are many things we cannot do, there are so many things we can do. Today, tomorrow and always we can fight for babies.