I appreciate so much the kind words you leave on our blog... I always love to see who and what you commented!! It's amazing how people stumble across our blog or I stumble on theirs, touching!!
To answer some questions...
The cause of anencephaly is disputed. Generally, neural tube defects do not follow direct patterns of heredity. Studies show that a woman who has had one child with a neural tube defect such as anencephaly has about a 3% risk of having another child with a neural tube defect. The specialist we went to said our odds were 1/1000 before Weslee, now that we've had an anencephalic baby our odds went to 1/100. The good news is w/ a huge amount of folic acid along w/ prenatal vitamins our odds go up to 1/700. Again, that's what our specialist said, there are many studies & many opinions on this matter. According to one website... "In the United States, approximately 1 out of 150,000 to 200,000 babies are born with anencephaly each year. Research has suggested that, overall, female babies are more likely to be affected by the disorder."
There is no cure or standard treatment for anencephaly and the prognosis is poor. Most anencephalic babies do not survive birth, accounting for 55% of non-aborted cases.
After meeting with the specialist all of our questions were answered; medically anyways. We were told that whether I delivered her then or @ 40 weeks she would not make it through the actual birth. Of course the doctors know more about the anatomy & physiology of anencephaly. In our case, Weslee was born @ 20 weeks; stillborn.
I was asked if we had time to prepare.... Honestly, even if we had 50 years I don't think one could be prepared. We went into our 20 week appointment anxiously awaiting the sex of our baby. After 3 minutes of pure bliss we were also told she was anencephalic. From the ultrasound room we went straight to the doctors office for him to explain exactly what was going on... of course being a nurse & with modern technology I was sure there was a bone flap or SOMETHING we could do once she arrived... It took Ben looking me in the eyes & telling me the reality of the situation before it actually hit me. The following day we met with the specialist.. Once we left the doctors office I felt like I had to whisper when talking to family & friends.. I didn't want Weslee to hear us talking about her & her future. Of course w/ her degree of anencephally she had no senses... It took the specialist telling me again before I truly understood. Ben & I prayed before going into the appointment that we would leave the specialist with a peace. That prayer was answered, we decided @ that point to cherish the time we had w/ her in my belly & to give thanks to God for allowing us to be her parents; even though we'd never know her on this physical earth. There were definitely times when we cried, cried, & cried more... I don't want to focus on the roller coaster of emotions we went on and continue to ride on a daily basis. Ben & I try to focus on the positives and be thankful!!
I hope I've answered your questions well.. I pray that by sharing Weslee's story I can help others going through difficult times like these, but most importantly show my faith & best case scenario bring others to Christ!!