We Have An Anniversary! Maddux’s Shunt Story…

Today is the one-year anniversary of Maddux’s shunt surgery. A surgery that, we as parents, tried to avoid for the entire first year of our son’s life. Completely out of fear. 

And for something we feared so greatly, we couldn’t be more grateful for it. 

Shunt surgery saved our boy’s life.

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About a year and a half ago, as Maddux was in recovery from his second brain surgery (an ETV revision) to treat his hydrocephalus we noticed the surgery site wasn’t healing quite like it should have. Soon thereafter, Maddux spiked a nasty fever and was inconsolable like I have never seen him before. That evening we learned that Maddux had contracted bacterial meningitis from the surgery. He had just turned a year old only a few weeks prior.

He was hospitalized for two weeks this time, on 3 very strong types of IV antibiotics to fight the infection and even put into isolation until he got better. After the two weeks were up, we were sent home to administer the meds for 5 additional weeks through Maddux’s picc line. When the medication ran its course, we noticed that the surgery site was still leaking. It was minimal but leaking fluid nonetheless. And the incision was still very much inflamed. Maddux was fussier than we’ve ever seen or heard him but only at night. At first Joe and I chalked it up to a teething baby. 

Around that same time, I came home for lunch one day. Maddux was his typical happy self, laughing that hysterical laugh that we love so much at the doggies running on the TV. About 3 hours later, my mom called to tell me that Maddux was throwing up a lot and she could not get him to settle down. Something was way off.

For the 3rd time in a matter of weeks, we rushed our son to the local ER. And we were not leaving until we had answers.

We spent close to 8 hours in the ER that evening until the test results revealed that the antibiotics Maddux was on for a month and a half never entirely cleared the infection. And close to midnight, his stats dropped lower than we’ve ever seen. Maddux was rushed into emergency surgery to have an EVD (external drain) placed to drain the excess fluid on his brain. At one point, he had a total of three drains coming from his brain.

We came very close to losing our son that night.

This was the beginning of a 4-month nightmare for our family. Ups and downs and a lot of setbacks in milestones for our son. At the end of this hospital stay, Maddux had endured 6 brain surgeries in his first year of life. While the infection finally cleared, it was obvious the hydrocephalus was still an issue that hadn’t been completely addressed. 

About a month after he was discharged from the hospital, we noticed that Maddux wasn’t making many improvements. The light in his eyes was gone. Smiles and laughter were far and few between. This was not normal for our boy. From the recommendation of a friend, whose son also has hydrocephalus and a shunt, we set up a consultation with top pediatric neurosurgeon, Dr. Gordon McComb at Children’s Hospital of Los Angeles. 

We weren’t prepared for what Dr. McComb candidly advised… “I’d like to schedule surgery this week to place one, possibly two shunts.” So matter of factly. After what our boy had just endured for 4 months, now we were talking another major brain surgery and immediately. We knew the day was coming but we hadn’t mentally prepared for it. At this point we were just taking it one day at a time.

Joe and I left that day feeling more conflicted than ever. 

After talking it over at home and with family and friends, we scheduled the surgery for the following week. 

The day before shunt surgery. Maddux getting his 1st official haircut by Heather Hernandez before it is all shaved off for surgery.

There was a noticeable improvement in Maddux immediately after surgery. I’ve heard others say the same thing but until you experience it, it’s hard to imagine how quickly one can get back to their baseline when the extreme pressure on the brain has been relieved. Dr. McComb told us that Maddux was a rare case. An area in the back part of the brain (occipital lobe) wasn’t communicating with the forebrain (frontal lobe) so he needed to place two VP shunts to address both areas of spinal fluid buildup. In addition, a lot of scar tissue had formed from the many surgeries he had from his meningitis infection that they had to work around that. Lastly, he removed as much of the “bad” skin surrounding the entry point of the frontal shunt (also caused from previous surgeries) as they could to avoid further issues with skin breakdown and potential infection. 

2 days post surgery; our boy’s smile is back!

That was a year ago today.

Maddux has since gained back and surpassed the milestones he lost throughout this process. He has also hit many new milestones!

We know that shunts can fail at any time. We know the symptoms to look for but we try not to live in fear of them. We take each day as it comes and are grateful for the research and technology that continues to improve all of the time and can offer our son and so many others the chance at living a full life.

One year post shunt surgery; such a happy kid!

10 thoughts on “We Have An Anniversary! Maddux’s Shunt Story…

  1. Wow Dez, you and Joe are so strong. I see why you’re celebrate this milestone. My prayers continued to be with you. May you rest in Him. Let us know if there is anything more you need.

  2. Such an incredible journey and loving family. Thank you Dez for sharing your amazing story to the world. It has truly put things into perspective and taught me to appreciate all the little things. You and your family are truly amazing and I just want to let you know that. Maddux is a beautiful, beautiful boy and one of the bravest boy I know. I wish nothing but the best and for more milestones to come.

  3. As a mama with a LO with 2 shunts….I’m proud of you guys for celebrating this milestone!!!! We avoided the shunts like plaque as well….until they were no option. But our little guy is doing great (despite the numerous revision and ER visits the first year!) :). Maddox is lovely!!! Best wishes to you and your little fighter! 🙂

    1. We avoided the shunt too until it was no longer an option. Definitely a love/hate relationship! I hope your LO is doing well! All the best to you ❤️

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