A journey that's just beginning...

Yesterday, October 25, 2012, we found out that our unborn child, Henry Jude, has Spina Bifida. I am certain I will never forget October 25, 2012, years from now I will probably still be able to tell you what I was wearing . It's amazing the things we remember from such life altering days. Words have the power to inspire, to bring joy, to bring pain, to bring laughter but to hear my doctor say the words "Spina Bifida" left me feeling numb in a way I had not expected.

We found out we were pregnant with Henry at the beginning of July and we were over joyed. As anyone would when you see that little plus sign on the stick you're immediately filled with hopes and dreams for your child, along with extreme exhaustion and all that other fun first trimester stuff. And then you hear your child’s heartbeat for the first time and your heart is full of pride; you never expect your doctor to come to you 9 weeks later and give you a diagnosis that you weren't expecting. We knew at about 18 weeks there was something wrong but Henry was too small for them to really know what we were dealing with. So we waited two weeks, had another ultrasound and Spina Bifida was confirmed.

So what is Spina Bifida?

As the days go on we will probably post an entire blog about what spina Bifida is exactly, but for today here is the short version. The information below was taken from the Mayo Clinic website.

"Spina bifida is part of a group of birth defects called neural tube defects. The neural tube is the embryonic structure that eventually develops into the baby's brain and spinal cord and the tissues that enclose them.
Normally, the neural tube forms early in the pregnancy and closes by the 28th day after conception. In babies with spina bifida, a portion of the neural tube fails to develop or close properly, causing defects in the spinal cord and in the bones of the backbone.

Spina bifida occurs in various forms of severity. When treatment for spina bifida is necessary, it's done through surgery, although such treatment doesn't always completely resolve the problem."


I spent much of the day yesterday on phone with doctors and nurses from Vandy Children's Hospital as well as Cincinnati Children's Hospital to see if Henry and I qualify for fetal surgery. Unfortunately one of the criteria for the fetal surgery is that the mother have a BMI of 35 or less. My BMI is 36. There was a big part of me yesterday that wanted to dwell on the fact that my weight was going to prevent Henry from having the prenatal surgery, but one of the nurses I spoke to kept making me repeat that Henry's condition was not my fault. She also said that I should take this as a sign that Henry and I were not supposed to undergo this type of procedure to fix his Spina Bifida. She kept saying over and over that the standard of care for babies born with Spina Bifida was repair after birth. She was a complete stranger and yet she offered me more comfort than I ever expected. her voice was calm and confident as she reassured me it was ok to be sad but that we were going to be ok.   

I will be heading to Cincinnati Children's Fetal Care Center next week to go through the two day surgery qualification program. Even knowing that we will not qualify for surgery, it was recommended we go because we will leave knowing more than what we know now. They will run a number of tests on Henry like a fetal MRI and an amniocentesis. That last one scares terrifies me. Once we have all the results from the tests we will meet with a neurosurgeon here in Louisville. The same surgeon that untethered Oliver's (our first born) spinal cord, so we know him and we are familiar with him and he is one of the best neurosurgeons in the country, and was recommend by both the hospitals I spoke with today. Henry will have surgery to repair the lesion within the first 24 hours after his birth. Which as a mom is the absolute last thing you want for your newborn, but it's what Henry needs. Nathan and I now know a lot about Spina Bifida but at the same time we know very little about Henry's case and what this will mean for his quality of life. In the coming days and weeks as we meet with doctors and specialists I have no doubt that more and more information will be given to us. They will run through scenarios of what Henry's life may be or may not be like. It's a journey with a lot of unknowns and those who know me well know that unknowns are not something I do well.

Right now it's hard for me to separate Henry from the Spina Bifida and that makes me really sad, because I know that Henry is more than Spina Bifida. So I find that every time I feel him wiggle I go straight to "he has Spina Bifida". Then I try to remind myself of the little things that I already know about Henry; like the fact that he loves chocolate milk (because I can't get enough of the stuff!) and he likes music. I know that Spina Bifida will always be a part of Henry's life but it will not always define who Henry is.

So why a blog?

Our journey is just beginning, and no doubt, it's going to be long, it's going to be overwhelming, it's going to be scary, sometimes painful and at times I imagine it will be heartbreaking. Nathan and I have family and friends that are both near and far and we hope this will be a place to stay up to date on our family, on Henry and his big brother, Oliver. This journey is one that will need to be covered by the prayers of many and some days I may write just to get it off my chest.

"Yet God has made everything beautiful for its own time. He has planted eternity in the human heart, but even so, people cannot see the whole scope of God’s work from beginning to end. "- Ecclesiastes 3:11.

Every day of this journey I will be reminded that God has chosen Nathan and I to be Henry's parents and so we will fight for him, we will love him, we will pray over him and we will believe that God has an amazing plan and purpose for this special child. This blog will serve as a reminder to us and to everyone that our God is faithful. I have no doubt that, in time, God will begin to reveal His purpose for the Hinson family. The verse above gives me great comfort because I don't have to know the scope of God's plan from beginning to end, I just have to have faith that He is the one with the plan.

- Erin-