Just the foot.
This was our mantra during my pregnancy after we found out that baby #2 had a left clubfoot. After the ultrasound, we opted for genetic testing to rule out other issues that can be related to clubfoot. I was told that clubfoot is a common birth defect, however, and usually an isolated incident. “It’s probably just the foot.”
As we awaited blood work results, I was incredibly nervous but also comforted by how healthy this pregnancy had been. I hadn’t had a drop of alcohol. My ulcerative colitis was under control. I’d been on a daily prenatal vitamin regimen for five years. I was exercising and eating well. While I know that doesn’t prevent certain prenatal issues, you hope it will put the odds somewhat in your favor.
Our genetic counselor called while I was driving, so I pulled over to answer. She said, “Torey, I have good news. Your AFP level was low. The baby doesn’t have spina bifida and everything else came back negative, as well.” It was such a huge relief that the floodgates opened big time. It’s funny, I know exactly the street I was on when I got that call because I was parked there for awhile. I was so relieved that the universe would give us this break, then immediately felt so awful for the women who get a different kind of call. For us, it was just the foot.
Over the next few months, we prepared for Austin’s arrival as usual. We educated ourselves on the treatment for clubfoot. We set up a Plan A (to start with an orthopedic surgeon in Columbus) and Plan B (move to a clubfoot specialist in St. Louis). We outfitted baby boy’s nursery with a ‘feathers & flying’ theme because we knew this boy would fly.
I had a planned cesarean section for February 10, because Austin had been hanging out in the breech position for a few weeks. We arrived at the hospital early that morning, and I was admitted and getting prepped for surgery. The doctor came by 30 minutes before my scheduled c-section to do a quick scan of the baby…who had turned head down! We were completely shocked.
We were given the option to induce right then, which was tempting because we were so ready to meet him, everything was neatly arranged at home, and Scott had started his paternity leave. After much deliberation, we decided that the baby wasn’t yet ready to meet us, and we’d let labor happen on its own. I apologized about a dozen times to the nurses and doctors on staff, but in hindsight it was the right choice for baby.
On Sunday February 19, I went into labor. Contractions were about 20 minutes apart, so I went to Costco to do some grocery shopping. 😊 When they hit 3-4 minutes apart, we left for the hospital where things progressed quickly. By the time I was admitted and the anesthesiologist got to my room, I was 9 cm dilated! And in a significant amount of pain, so I opted for an epidural. My anthesiologist’s name was Rhonda, which was easy to remember because I kept thinking “Help me Rhonda, help help me Rhonda!” Help me she did, and the rest of labor and delivery was actually quite enjoyable. I was so ready to meet this little boy and kiss his curly foot!
After three rounds of pushing, Austin Jones Armul was born and placed on my chest. He was completely, utterly perfect. His teeny face was new to me, but my heart had been waiting for him a long time. Exactly him. It’s hard to describe, but Austin completes me.
I was oblivious to anything else going on, including Austin apparently turning grey. The nurse said she needed to take him from me, and within 30 seconds a team of NICU doctors and nurses burst into the delivery room. I hadn’t heard the alarm, but things got really crazy, really fast. Which is saying something because I had just given birth 3 minutes prior and childbirth isn’t ever not crazy.
I could hear panicky voices in the corner where they had taken Austin, and no baby cries. I couldn’t see Austin, but I could see Scott’s face looking at him, which was just as bad.
I held my breath waiting for a big, hearty baby cry, but it was silent. Then I heard one of the nurses say, “You need to check an opening on his spine.”
Chaos ensued, in my mind, in the room, probably both. Austin still wasn’t breathing enough, so they carted him quickly to the NICU where he was put on a cpap machine. Thankfully Scott was able to go with him, because I couldn’t stand the thought of him being new and alone in the world.
Before she left, my doctor talked with me to help calm me down. My nurse went to check on another patient. Scott, Austin and Austin’s medical groupies were in the NICU. I was alone in the room, which was incredibly surreal. You expect this time after having a baby to be busy and messy and overwhelming, or maybe calm and quiet with a baby on your chest. Just not empty. Not silent. I waited for Scott’s texts to let me know whether Austin was breathing and – thank goodness – those texts came before long. Austin had responded beautifully to the oxygen treatment and had stabilized. One hurdle down.
A day later, Austin was transferred to Nationwide Children’s Hospital. My doctors discharged me early so I could go with him. I rode in the front of the ambulance while he was transported in the back in an incubator. We were comfortable at Nationwide, which is an amazing children’s hospital, but beyond anxious to get the MRI done and hear the results from a neurosurgeon.
We learned that Austin has a rare form of spina bifida called lipomyelomeningocele. It’s a closed form of spina bifida (so the spine wasn’t open after delivery, but the blood and chaos would make it easy to think that) that is not detected in genetic testing and usually not in ultrasounds.
Lipomyelomeningocele occurs when a fat mass forms in the neural tube, around the 5th week of pregnancy, preventing the normal closure and formation of the spinal cord. It literally means “lipo” (fat) + “myelo” (spinal nerves) + “meninge” (spinal membranes) + “cele” (swelling). The mass grows up and through the cord, in Austin’s case tethering the spinal cord and causing his left club foot and paralysis below his left knee. So, not just the foot.
As we awaited MRI results, we heard mostly worse case scenarios. We were originally told that he may need surgery right then to repair his spinal cord, which terrified us. He was so teeny, and surgery is expected to take 10-12 hours for this type of procedure. We also knew the brain is often involved in spina bifida. MRI results showed us the extent of organ involvement, which was just the foot and spinal cord, not the brain. With no immediate need for surgery. Finally…good news. We were sent home from the NICU a week later with a plan to get him bigger and stronger for surgery, follow-up doctor’s appointments and weekly physical therapy.
At two weeks old, Austin got his first cast to correct his club foot. He got a new cast every week, starting in Columbus and then moving to St. Louis with clubfoot specialist Dr. Matthew Dobbs. He got a total of 9 casts, Achilles tendon surgery and is now in part-time bracing that will continue until he’s 4-5 years old. It has not been an easy process by any stretch of the imagination, but we’re now in a good place with the foot.
The lipomyelomeningocele is another beast. It’s like a medical advent calendar, where new doors open up. You never know what you’re going to get and if or when new spinal cord deficits will arise.
In August, an MRI showed that the tethered spinal cord is causing a Chiari malformation in his brain. He is cognitively intact (in fact, he’s a super smart and mischievous little pumpkin!), but these malformations can lead to pain, extreme headaches, loss of balance and other problems.
We’re planning surgery in February, during which the neurosurgeons will remove the tops of his vertebrae and open the dura mater to access his spinal cord. Once inside, they’ll untether his cord, which should relieve pressure on his brain and completely, hopefully, reverse the Chiari malformation. They’ll also remove as much of the fat in the cord as they can without disrupting active nerves.
So that’s how just the foot became just the foot, spinal cord and brain.
And also why my child is my superhero. Both children, actually.
And why I have a whole new appreciation for humanity. Because people are so kind to you when you walk this road. My husband, my family and my friends have been nothing short of extraordinary.
And why I’ve taken up kickboxing. Because “just the foot, spinal cord and brain” makes me want to punch the stuffing out of things. Thank you, 9Round.
And lastly, why I’ve put my career on hold. Because my only objective right now is to get Austin off on the right foot (ha, clubfoot humor😊). His body is making neural connections, forming synapses and building muscle memory. It’s formative time and connections that we’ll never get to re-do. So my job is to give him the support, attention and treatment he needs right now.
I want to finish by saying that Austin is doing miraculously. He rolled, sat up and crawled early for his age and continues to amaze us in every way. I swear he prides himself on surprising us (see c-section story above). Nothing and nobody holds him back from doing what he wants to do. It’s a personality trait that will fare him well. I know that his story will be spectacular. It already is.