Category: Spina Bifida

So as many of you have heard our next son has been diagnosed with Spina Bifida Myelomenigocele. On September 7th we had a 20 week ultrasound. We left excited that we were having another boy, but later that night our OB office called and let us know they found something abnormal on the ultrasound and wanted us to come in on the 8^th for a level 2 u/s to confirm. She told us they saw a Neural Tube Defect. The Ob tried the best she could to explain what it is but all she knew was the diagnosis and not really the condition. It was still a scary situation for us because it was something we had never heard of, and what we quickly googled was completely undeveloped babies that would not survive.  It was a emotional night but we tried not to freak out until we were able to talk to the genetics counselor and high risk OB specialist.

The next day we went in and they were able to give us much better information on Neural Tube Defects and Spina Bifida. We confirmed that it was Spina Bifida Myelomenigocele, which is the most common birth defect that happens to every 1/1000 fetus’s.  They explained that while the baby was forming at 28 days gestation the spine did not form properly causing nerve damage and the lower spine to remain open around the lumbar/sacral level. Because of this nerve damage, he will have difficulty walking if he can walk at all. Most children with SB also have difficulty with bladder and bowel function. There are a few other things that may happen, but we wont know until he is born and somethings not until he is older. His disability will most likely be physical and not mental. We will be delivering in Grand Rapids, MI, probably by C-section and his surgery will be either later that day or the next morning. During that time they will close the opening on his back. They expect the NICU stay will be about 2 weeks for healing. They will also monitor the fluid in his brain to determine if he needs a shunt placed in the back of his head. Sometimes because of the tugging on the spine the brain doesn’t drain its fluid. This would mean another surgery.

Once we were told all this, we were saddened that our son would have to go through all of this so soon in life thinking about the surgery and many doctor appointments, but we were so overjoyed and blessed that he would be alright and able to have a life with us. Even though many of you are just hearing about this, know that we have had time to digest all the information and we are alright, we can’t wait to meet this little guy.

In John 9 Jesus healed a blind man and everyone was questioning why he was blind and Jesus replied, “…this happened so that the work of God might be displayed in his life” (John 9:3) This is our prayer for our son, that the work of God would be displayed. We look forward to what God will do.

We decided to start a family blog to keep everyone up to date on the progress of this little guy. We know we will be going through a lot the first few weeks of his life and would like to keep everyone updated for prayer and support. For those we have talked to about this already we are thankful for your prayers and encouragement for our son and family. While we have had a while to take this all in, if anyone has questions please feel free to contact us and ask. 

I have been blessed with meeting a couple mom’s online from Grand Rapids and they are willing to share their child’s life for a better understanding of SB. If you have time please visit their blogs of their family and children, Carson and Greyson. I have been so encouraged by their children and just get more excited to meet this little guy.

 Here are the links, and both their blogs start once they found out the diagnosis of SB during pregnancy. Please read and be encouraged.

Greyson – http://ourlittlegibblet.blogspot.com/

Carson – http://babyboybush.blogspot.com/