A Visit to Vanderbilt

Things don't go wrong and break your heart so you can become bitter.They happen to break you down and build you up so you can be all that you were intended to be. 

- Charles Jones

Last Wednesday was THE day. The day all of you were so graciously praying and thinking about, anticipating the results right along with us.

We arrived at Vanderbilt Children's Hospital at 7:30 AM and were promptly escorted to the ultrasound room before we could fill out the first page of the stack of papers we had been handed. And with that, the whirlwind began.

The ultrasound lasted a little over an hour. Pictures upon pictures were taken. Every angle of our sweet boy was explored with a fine-toothed comb. The clarity of the machines were amazing, reassuring us that whatever they found would be accompanied with the most accuracy possible.

The ultrasound was finished and we were instructed to sit in an exam room across the hall while they edited pictures and reviewed the results. A sweet nurse came in and offered us snacks and drinks while we waited.

The Maternal-Fetal Medicine (MFM) OB came in shortly with a warm, inviting disposition, as if we were the only patients she was seeing all day. She talked all about Spina Bifida. She talked about ventricle sizes. She talked about shunts. Not much of this information was new to us.

Then came the curve ball, the one that really rocked our world.

She pulled out a piece of paper she had photocopied for us. It was a diagram of the spine, labeled with numbered vertebrae and functions for each level. We had seen this same diagram a dozen times before - online and from our specialist in Jackson. What was new to us were the codes handwritten in the bottom corner of the page: L2-L3.

Justin squeezed my hand around the same time my eyes started filling with tears.

I tried to think positively. I tried to hope that those numbers were not directed at us and our individual case. But that didn't change what came next. The Dr. continued, "We see that, with your son, his lesion falls somewhere around the L2-L3 vertebrae. As you can see on the diagram, although each individual case is different, lesions in this location usually affect a baby's ability to have strength and function in the hips and everything below."

I was not prepared for this information.

We had been walking around for a month thinking his lesion was low - very low - somewhere around the S1 vertebrae. But now, the super-duper state of the art machines that I mentioned earlier have just identified it to be around 5 vertebrae higher on the spine. This is the difference between being able to walk unassisted and always being confined to a wheelchair. I was terrified.

As I clung desperately to the last strand of my emotional sanity for the day, the OB threw us more unexpected information.

They were concerned about his heart. 

The doctor said it all appeared to be fine, with normal blood flow patterns and valves, but the way it was positioned in his chest was cause for concern. So, we were quickly escorted down to the 5th Floor to have a Fetal Echo Cardiogram.

We waited, and I cried. I pleaded with God as I prayed. I cried harder as I felt the beginnings of anger welling up inside of me. I told God that nothing was supposed to be wrong with his heart! God probably laughed.

We didn't wait terribly long, but it was long enough for my cries to turn in to sobs and for my head to begin pounding with a force greater than any I have experienced. I laid back on an ultrasound table for the second time that day and closed my eyes. The scan was finished in around 30 minutes, and we waited again to hear the results. The heart doctor came in, introduced herself and decided she wanted to take a few looks for herself. After another 10 minute exam, she put down the wand and told us a whole bunch of information, but the gist of it: everything looked fine!

Through tears, I let out a big sigh, as we remembered to be thankful for the blessings we are given.

We then met with the surgeon who has preformed all of the in utero surgeries at Vanderbilt since they started. We met with the neonatologist/ pediatrician. The genetic counselor. A social worker. The billing department. And the MFM OB again.

Somewhere in there, I threw up - maybe three times. I cried a whole lot. And was in major shock for most of our visit.

We gathered a lot of information, and asked a whole lot of questions. We wanted to know - needed to know -  Is this surgery the right thing to do for our situation?

And at the end of the day, after an hour spent in a very hot MRI machine, we left the hospital at 6:30 PM, more conflicted then when we started.

We were emotionally and physically exhausted. We went back to the hotel room and eventually ordered room service. We tried to digest and decipher all of the information of the day, but we couldn't. 'If it has even the smallest chance of helping....', was the main sentence.

The next morning, since we still had a few more questions, we stopped by the hospital one last time to talk a little more about the benefits of the surgery. We had heard the risks. And we had heard of how some babies benefit from the surgery, but what I wanted to know, how will my baby benefit from the surgery?

And so we asked - and here's what we found out:

Little brother's hydrocephalus is beyond the point where the doctors think the surgery would give much of a chance at alleviating the need for a shunt immediately after birth - and reducing the need for a shunt may be the biggest reason to have the surgery.

His lesion is long, and flat, and higher than most who see much benefit from the surgery. Lesions like this are more complicated to close. Some children with this type of lesion require skin grafts after birth to completely close the wound. Since the surgery isn't any simpler in utero, lesions of this type have a greater risk of opening back up in the womb, requiring surgery after birth to re-close it.

The surgery would be more complicated on me since I have an anterior placenta. The surgeons would have to take my uterus completely out of my body and turn it over, hoping my ligaments are stretchy enough for them to operate on the backside of my uterus.

Bottom line - there are a lot of risks to the procedure and, at least in our case, no clear benefits. We have conflicted feelings right now. We are still coming to terms with the news that Little Brother's spina bifida is more severe than we originally thought, yet we still give thanks that the original progosis - that he would not live - is incorrect. We wish the surgery could offer a reasonable possibility of helping our son, but I am glad that I will be able to dance with Ellery tomorrow instead of lying on an operating table.

Please continue to pray for Little Brother's health and for God to strengthen our family. And we thank you all so much for the prayers that you have already offered as well as your words of encouragement during our time of need.