Monday, March 30, 2015

The first week...

In the days that followed Eliza's diagnosis, J.B. and I began to try to wrap our heads around this condition called spina bifida. We wearily started reading articles and joining online support groups filled with parents that had gone before us. 

With the information at our fingertips and forums filled with encouraging parents, we finally began to makes sense of it all.

For those of you still in the dark about spina bifida and hydrocephalus, let me give you a crash course. The gist with spina bifida is that there is an opening in the spine beginning at a particular vertebrae. In Eliza's case, we were told it began at L3 (or the third lumbar vertebrae).

 For those of you that are visual, here's an image of the spine...

Generally speaking, spina bifida is sort of line a extreme spinal cord injury that a baby is born with. From that point down there is major damage to the body's nerves/bladder and bowel issues/mobility etc. There is no cure for spina bifida. The only treatment is to close the opening in the spine and then manage the damage that has been done to the body.

There is also a secondary condition called hydrocephalus that typically comes with SB. Your brain and spine are very intricately connected. The spine is the column for all those nerves from the brain to reach the rest of your body. Because of the lesion on the back, the damaged spinal cord and nerves are pulling down on the brain. This pressure causes the brain to gradually shift and that shifting blocks the normal drainage of cerebral spinal fluid in the brain. When that fluid can't drain, it builds up in the brain and causes its own pressure. Eventually, it can cause brain damage. With hydrocephalus, the brain is monitored regularly. When fluid in the brain reaches a certain danger point, surgery is done to place a shunt in the brain that will drain the fluid. Shunts are for life. They can also clog, get infected, or fail, so this is a lifelong management process to make sure everything is working properly.

Are you overwhelmed yet? Come sit by me.

So what do we do now?

During our previous appointment with Dr. Gonzalez, he had mentioned the possibility of a fetal surgery. Yes, fetal. As in, they operate on my unborn baby while I'm still carrying her. It was new, risky and not for everyone, but if we wanted to check it out, he'd put us in touch with the Fetal Spina Bifida Clinic at Vanderbilt Children's Hospital. We readily agreed and waited for more information.

We were quickly contacted by the clinic in Nashville, which gave us tons of information about the fetal surgery. Remember there is no cure for spina bifida. But this surgery is a type of early management that has had some positive results. The fetal surgery has to happen around the 22nd-24th week of pregnancy and is only offered by a few hospitals in the country.

Basically the clinic will assess both mom and baby to see if they would be a good fit for the procedure. If mom and baby are candidates, you are allowed to enter the program for the high risk surgery. During the surgery, a maternal surgeon opens the uterus and a pediatric neurosurgeon repairs lesion in the baby's back. The hope is that by closing the lesion on the back in utero, it might resolve hydrocephalus and other brain issues. There is also a possibility of a bit more physical mobility. Every case is different though, so the benefits are always up in the air.

And obviously, its very risky. The surgery itself can carry dramatic dangers to the baby and also complications to mom. By and large, the biggest risk is to the baby. The sweet baby that is so little, its impossible to survive outside the womb yet if something goes wrong during surgery. Preterm labor risks are up there too. Having this intense of a surgery really does a number on the pregnancy, so most of these babies are born super early, which then leaves you with the complications of spina bifida plus any preemie issues. To try to curtail some of these risks, having this surgery is similar to entering a long term program. Becoming a part of the program is a massive commitment. Patients have to move close to the hospital with your family and/or support person. Full bed rest is required from the time of the surgery until the day you deliver (about 4 months!). Consider putting your entire life on hold as your family moves to a new city and sits in a hospital apartment for months on end, hoping for a successful outcome.  

So what if we don't have fetal surgery?

Well, the second option for spina bifida babies is the more traditional route. Carrying Eliza hopefully to term, monitoring her growth and the potential hydrocephalus, then delivering via c-section. She would have the back closure operation the day after birth and then (as with either option) would be monitored for a potential brain shunt if necessary. The NICU would be our home away from home for weeks.

So much information to process. So many big decisions to make. And fast because of the time limits for the fetal surgery.

The Vanderbilt team said we looked great on paper and that they would like to meet with us to learn more about Eliza's specific case and see if we would be good candidates for the fetal surgery. A surgical evaluation date is set for April 13.

Be praying for us throughout this decision process. We want the very best for Eliza and all of our family. Hopefully there will be a clear choice!

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