MOMS Trial and Fetal Surgery
September 22 was basically a whirlwind of a day. The Monday before, I received a phone call from the nurse at the Fetal Center of Vanderbilt saying Cameron and I were being considered as candidates for a procedure called “Open Fetal Surgery.” Our doctor in Clarksville briefly explained the process to us, however we were still in information overload from Atticus’ initial diagnosis so it was difficult to explain to our families exactly what kind of consultation we were going in for at Children’s. Through the bustle of my classroom, I asked our nurse as many questions as I could so we were ready on Wednesday. I remember distinctly asking her, “If I were to do this, is there a chance my baby could die?” Without hesitation, she simply responded, “Yes.” Y’all, let me tell you…I pride myself on being mentally strong, but when a person you’ve never met yet point blank tells you the risk of you losing your child is present should you choose to do an innovative procedure to increase their quality of life, it changes you. From that moment on I knew every decision I made going forward could result in losing Atticus before even having met him.
““If I were to do this, is there a chance my baby could die?” Without hesitation, she simply responded, “Yes.” ”
We woke up at our normal time Wednesday morning and told our fur babies goodbye. Leaving at 6:00 to get to a Nashville appointment at 7:30, we bravely thought we had enough time. At 7:25, I was hoofing it up the concourse to Monroe Carroll Jr. Children’s Hospital in chunky heels and a too-hot sweater, making it just in time to our appointment at 7:30; breathless and a little sweaty. Our first adventure that morning was an hour and a half long ultrasound, which sounds easy at first until you’re 45 minutes in with a full bladder and a baby that won’t sit still to save his own life. Our poor sonographer was doing her best to get what she needed, but when you’re scanning the offspring of Cameron (from whom Atticus gets his squirrelly ways honestly) no one stands a chance of getting out of the room with a few bruises and aching muscles. I distinctly remember watching his legs move and praying that God would just continue to bless us with ambulation as he grew. I watched his bubble on his spine wondering if it was painful to him. We saw his little face look at us and wave, then promptly take his hand and hide the parts our tech needed to scan in that moment. He was, and is, the perfect mix of the two of us; sweet and precious, but difficult and stubborn at the same time.
The human brain is a magical thing with just how much information it can handle before it decides to shut down. Our first encounter with the medical staff who would be considering us for Open Fetal Surgery was an amazing woman who I would grow to adore and trust with my baby’s life, Dr. Kelly Bennett. She sat down with us and calmly explained the MOMS trial which was an open fetal surgery pioneered in the late 90’s to try and stay the effects of the open spinal chord in babies with Spina Bifida. Her role, as she explained was to tell us all of the risks involved in going forward with this procedure, and her counterpart would come in after and talk about all of the benefits. In the easy, gentle way only Dr. Bennett can she explained to us the risks were mostly to the mother during surgery including pre-term labor, uterine rupture, separation of the membrane during or after surgery, and maternal death (though in the US, no mother has lost their life as a result of this surgery). She also explained the risk involved for Atticus as well, including the gut wrenching loss of life that could happen. About an hour and a half into our consult with Dr. Bennett, she said she would leave the room for a few minutes to allow Cameron and I to discuss whether we wanted to proceed or not before the neurosurgeon came in. The reason being she told Cameron to be ready on surgery day for the phone call asking whether or not he wanted the team to proceed should a complication arise. Essentially, we were faced with the question when I went into surgery and IF something happened, who would we save? Dr. Bennett made it clear her job was to save my life, but any decision she made would be consulted with Cameron as well.
The door barely closed and Cam and I looked at each other and said, “Let’s do it.”
“9 Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go. Joshua 1:9”
You see, to me the risk to myself meant absolutely nothing. All I could think about was Atticus and Cameron, and getting to a point where my boy would be here and be alive. We briefly spoke about should a complication arise, we wanted them to do everything in their power to continue as safely as possible and stop when they needed. But for us the idea of surgery was extremely simple. God had opened doors, QUICKLY mind you, to get us here. He gave us the best possible worst news imaginable as parents, and as far as we could see was paving the way for us to be candidates to this surgery, so why would we stop? Was there risk to my life? Sure. Was there risk to Atticus? Absolutely. But in the end, we knew God was going to show up and show off with this kid so we weren’t stopping yet. Again, I just remembered that voice when I got off the phone a week ago asking me, “How much do you trust me?” In that moment and the moments that would come after, I trusted God completely.
We arrived at the Fetal Center at Monroe Carroll Jr. Children’s Hospital at 7:25 that morning. We left the hospital at 4:30 that afternoon having sat through 7 doctor’s appointments, one ultrasound, one MRI, and one empty lunch box of snacks that barely lasted us to 2:30 p.m. On the way home, we stopped at Starbucks while I called my mother and explained to her that with a resounding, “Yes,” the Open Fetal Surgery team decided Cameron, Atticus, and I were the perfect candidates for this procedure and surgery was set for October 5th at 8 a.m. The drive home was filled with conversations about how Cameron and I just knew God was going to work through us in this procedure, and that there was no reason to fear. We knew God was going to use our son to impact the lives of everyone he met, and that we were chosen to be his mom and dad for such a time as this. We believed when God said “Do not be afraid, I will be with you,” He meant it. He was sitting in the consult room at Vanderbilt with us. He was in the original ultrasound room when we got our diagnosis a week earlier. He was with us in Clarksville when I was getting my painful amniocentesis completed. He was with us when we were driving home. And he would be with us every step of the way from that point forward.
Friends, don’t think this journey wasn’t filled with tears and anxiety, though. Oh no, there was plenty of that. The morning after our consultation, I woke up at 1:30 a.m. with the enemy whispering in my ear, “Your son’s going to die. God’s using this as an object lesson, you’re going to walk out of this with tragedy, not victory.” The day after when I looked at my students, all perfectly ambulatory and healthy, I thought to myself, “Why can’t my son be like that, too? Why was he chosen to have a neural tube defect and be forever different from his friends?” In the days that lead up to surgery, there were moments where insurance fell through; we needed housing ASAP; we needed numerous sick days because I was to be out of work until almost April and I only had 8 of mine left; we were stressed about who would take care of our zoo of animals while we were gone; I would literally miss every holiday from this point forward as I was to relocate to Nashville with my mom for the remainder of my recovery…my head space was extremely loud. For only a few days. It’s funny how the Lord will let us be human for just a little while before He shows time and time again just how much He loves us. When I say every single worry we had was fulfilled, I mean down to the last remaining sick day being covered He provided. Again, “How much do you trust me?” Cameron and I talked many times in the days leading up to surgery the whispers of the enemy are meant to snowball into anxiety and destruction of peace. They’re not God’s voice that truly does provide peace beyond all compare. At church one Sunday, Nate preached from the book of James and simply said “Adam and Eve chose to listen to the serpent over God. Which wisdom are you choosing to listen to?” From that moment on, there was no question. I would listen and believe the voice of God. The voice that doesn’t create chaos, but creates peace. The voice that says, “You can trust me, I will get you through this.” The voice that calms our hearts and minds with a single word. The voice that would be speaking to my surgical team that morning to fix my son. All we had to do now was get ourselves to Nashville and watch God work.
Many have asked for a description of the Open Fetal Surgery Atticus and I went through. Below is the link to Vanderbilt’s website on a description of the surgery, as well as the MOMS trial that pioneered the surgery 20 years ago. There is also a link to Spina Bifida myelomenigocele as well so you can get a better idea of what Spina Bifida is, its effects, and long-term care as well.
https://news.vanderbilt.edu/2011/02/09/vanderbilt-pioneered-fetal-surgery-procedure-yields-positive-results/
https://www.chop.edu/treatments/fetal-surgery-spina-bifida
https://www.chop.edu/centers-programs/center-fetal-diagnosis-and-treatment/management-myelomeningocele-study
