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 8th 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.
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| Our baby boy at 24 weeks during our 3rd u/s |
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/
Amanda
October 20, 2010 at 10:43 amI think blogs are a great idea, one stop shop for family and friends to keep in touch and get updated.
I remember that first night of Google – it was horrible! Google is not medical-friendly.
I LOVE that picture of your son in your banner, Atreyu what a beautiful (handsome) name!
Nate and Emily
October 20, 2010 at 12:38 pmLooking forward to the updates! It is an incredible thing to witness God's work displayed in our children's lives. It is already apparent- even before his birth.
Anonymous
October 20, 2010 at 2:40 pmGreat idea, you guys. Sometimes those of us who care yet don't see you often would like an update but know you probably don't just want to talk bf all the time. Read your links–amazingly cool! Joined with you in prayer today. ~Jeanne
Leigh and Andy
October 20, 2010 at 5:13 pmSo glad that you started a blog! Such a great way to keep everyone updated all at once! I can't wait to get together soon. 🙂
Joanna (and David)
October 22, 2010 at 1:01 pmHi! I found your blog on Cassie's blog and wanted to tell you how beautiful your son is and how your words about your upcoming little angel encouraged me. We have been so blessed by those friends we have met along this journey as well (like Leigh and Andy – the first family we found after receiving our son's diagnosis) and are so happy to know you as well. 🙂 Congratulations on your newest little angel and we will keep you all in our prayers. Please feel free to check out our family blog as well (www.babyboypenny.blogspot.com) if you haven't already done so. Can't wait to follow your blog!
Angela Stevens
October 22, 2010 at 4:20 pmHi,
I was on Cassie's blog and saw her post about your new little guy. Your story sounds exactly like my son's. We even found out in Sept and Aaron was born in January. Please visit my blog and see him as an encouragement as well.
Jamie
October 22, 2010 at 5:59 pmI remember hearing the news when I went in for an ultrasound at 22 weeks. I remember feeling so many emotions, but throught it all, I knew God was walking the journey with us. As a little encouragement, Madi is amazing and touches lives every day. Your little one will be absolutely amazing too!
Kathy
October 22, 2010 at 8:12 pmWe also found out at our 22 week ultrasound. The fear of the unknown was overwhelming, but God is good and He knows what He's doing. Before Alyssa was born I never would have imagined myself the mother of a special needs child, but we wouldn't trade her for 1000 healthy children. If interested, you can read about her journey at http://www.carepages.com and then search Alyssa Luersman. I'm looking forward to following your journey!
Kathy Luersman
mom of Derek (9), Kristen (8), Adam (4), and Alyssa (17 months, L5 w/ shunted hydro, 1 revision @ 3 months)
Jen
October 22, 2010 at 9:41 pm"Welcome to Holland" (google that poem. It's great)
I too love the verses from John 9. Our son was born 3 years ago with Spina Bifida. We found out at 25 weeks. He has been an amazing blessing to our lives and God has used him mightily.
We'll be praying for you.
Jen Potter
Mom to Liam (6), Kate (5), Owen (3), Zane (1), and Evie due in 4 weeks.
Owen has Myelomenigocele L1-L3, is shunted, walks independently, attends preschool, and LOVES riding the bus.
Here's our site:
http://www.caringbridge.org/visit/owenpotter
The Devilwoman
October 23, 2010 at 2:47 pmStarting a blog is a great idea, very cathartic! I remember not long ago, I was in your shoes. I had a diagnosis and an ultrasound picture… and I was in love with a baby my heart was just breaking for.
My baby's lesion is lumbar/sacral too, and we've been told he will walk. He may need braces, but he will walk. I promise you that there is much more to be hopeful about than not.
We deliver in less than a month and I will be thinking about you and your family, you will be in my prayers as I know the place you're in isn't easy, but it does get better.
laura
October 25, 2010 at 12:17 pmLooking forward to seeing more of your family with this blog:)