Six weeks after surgery

Aug 5, 2016
4 min read

At 18 weeks Johnna and her husband found out that their baby boy had spina bifida. Johnna is documenting her journey on this blog as an Everyday People contributor. To learn more about Johnna's story, click here.

My Recovery

I can’t believe it has been more than six weeks since my surgery. Some days I feel like time is standing still, but other days seem to pass by so quickly. My body has followed a similar pattern. Sometimes I feel great and have lots of energy, while other times I struggle with some pain and feelings of exhaustion.

One of the most difficult parts of recovery has been knowing what is a “normal” pregnancy feeling and what is the result of surgery. Recently, I have felt lots of small shooting pains all across my belly. The doctors say this is most likely the scar tissue in my uterus stretching and growing.

Despite some ups and downs, overall I have been blessed and experienced very few side effects or complications. In fact, my incision is now just a thin grey line. It amazes me what the body can do.

How our baby is doing

Our son has also continued to thrive. Every week, we have a sonogram where doctors take a look at his heart rate, ventricles, leg movement, overall development, and my placenta. So far, everything has looked good other than some of the movement in his right foot.

We recently learned that his right foot is clubbed, but he has continued to demonstrate good movement in the left leg and the right knee. Our doctors explained that movement in the knee is the key to walking, so they are confident our little man will be able to walk despite the clubbed foot. Of course only time will tell, but all signs are positive.

At first I took the news kind of hard. When you know your child is going to face challenges, the last thing you want to hear about is one more thing he will have to deal with. That being said, our doctors have told us not to worry. They say his foot can easily be fixed through casting or surgery. We will meet with a specialist in August to learn more.

Although I was upset at first, I am counting our blessings. We have been so fortunate in many ways and I know nothing is going to slow my little man down!

Watching him grow!

It’s hard to explain what it has been like getting a sonogram every week. It has become our normal, but I know not many mothers get to see their baby grow and change week by week. Every time I see his little heart beating, tears fill my eyes.

The experience is something I will always hold close to my heart. With the 3-D imagining, I am able to see my son’s features develop before he is even born. What a rare and unique experience! Right now, he looks an awful lot like his daddy.

MRI Results – the moment we have been waiting for…

Last week, we had an extra special appointment…our six-week post surgery MRI. This is a moment we have been waiting for since this whole process began. The MRI tells us more about the results of the surgery on our baby’s brain.

Prior to surgery, our son’s cerebellum or hindbrain, was protruding downward into the spinal canal/neck area. This is called a Chiari II malformation and it can block the normal flow of spinal fluid. This often causes a condition known as hydrocephalus, which is the buildup of excess spinal fluid on the brain. If left untreated, the pressure can cause brain damage and other complications.

According to my doctors, 80 percent of children born with spina bifida will need a device known as a shunt to help drain the excess fluid off of their brains. However, one major benefit to having in-utero surgery for spina bifida is that it decreases the need for a shunt by half…dropping that number to 40 percent. A shunt is a tube that is surgically implanted in the brain to drain the excess fluid and relieve pressure inside the head. Doctors say shunts are a good treatment option, but they are a piece of equipment and will need to be replaced or revised at some point. This can mean additional surgeries or complications for kids with spina bifida. Needing a shunt is not the end of the world, but if our son doesn’t need it that is one less thing to worry about.

Research has shown that after in-utero surgery for spina bifida the cerebellum or hindbrain often moves back up to its proper place. This is key factor in reducing the need for a shunt because it relieves the tension and pressure that causes excess fluid to build up on the brain. We hoped and prayed this would happen for us.

It felt like our MRI scan would never come, so you can imagine our joy and relief when the neurosurgeon told us our son’s cerebellum had moved back to where it belongs!

In fact, Dr. Whitehead told us the reversal is one of the best he has seen. We couldn’t have asked for any better news! It doesn’t mean our little one won’t need a shunt, but it does put us in the best possible position to not need one.

These results show the surgery was successful! Either way, I feel surgery was the best decision for our family.