FIT4MOM x Jess Wilson
*You are not alone. Our blog series, Motherhood Untold, tells the stories of real moms navigating motherhood's struggles, triumphs, and challenges.
In this installment of Motherhood Untold, we hear from Jess Wilson who kindly shared her story with us.
“We have found something significant.”
Possibly one of the last things you want to hear after your 13-week ultrasound. Something I was not expecting to hear even after the doctor asked me if I wanted to call my husband before she gave me the news. I did not call him. I was so blissfully unaware that I laughed that question off and wondered “Why would I do that? He’s working.”. My smile quickly diminished as she began, “We have found something significant”. Spina Bifida. My 13-week-old baby boy had Spina Bifida and I had no idea what that meant. I had heard of it before of course, but had no concept of what that was going to mean for MY baby, how this would affect the rest of my pregnancy, and how drastically our lives were about to change. I also didn’t know the miracle I was about to witness, and that our lives WERE about to change, but not in the way we expected.
Landon was diagnosed with Spina Bifida Myelomeningocele, the most severe form of Spina Bifida. Spina bifida is a birth defect that occurs when the spine doesn’t close properly during fetal development (source). This condition can affect all of one's lower extremities including their ability to walk, and go to the bathroom on their own, as well as could cause them to develop hydrocephalus where extra fluid builds up in the brain and a shunt is put in place.
As my doctor is explaining all of these possible outcomes and more for my baby boy, I began to panic. The most common surgery for a person with Spina Bifida is done as soon as the baby is born. I began to think of birthing my baby boy and immediately handing him over to undergo surgery to patch up his back. What would that be like? Would I be able to handle it? What would that do to a newborn baby? As my mind was spinning, my doctor stopped it by saying, “Well, there is one other option.” She told me that Texas Children’s Hospital in Houston invented surgery for patients pregnant with babies with SB. A surgery was done while the baby was still in utero.
Fetoscopic fetal surgery repairs the defect through two tiny incisions in the uterus, using a small camera known as a fetoscope. We would undergo surgery at 24-25 weeks pregnant where the doctors would physically stitch up my baby's back AND I would still be able to deliver vaginally, if I was fortunate to have that option. My jaw was on the floor. I had never even been to the hospital before other than to give birth to my first child, let alone have any kind of surgery... and this surgery would be done while I was pregnant!? I couldn’t believe it was even possible. But as she started to explain the possible benefits like my child could maybe walk if given this chance, it was a no-brainer. I was going to do this surgery. We were going to give my son the best chance possible to have a happy and fulfilling life.
But, there was a catch. They don’t just take anyone for these surgeries. You and your baby have to pass certain criteria and for most of the tests required, I was not able to take them until I was farther along in my pregnancy. The wait to take the tests was torture. The wait to hear the results was even worse. But the day we received the news that we were candidates was one of the best phone calls I have ever received.
So we were off! Our parents took care of our Marlee girl as we left San Diego and met with the team of doctors in Houston who were all going to be present for the big day! No joke, there were over 20 people in my surgery room all ready to assist if any of the risks were to become a reality.
October 12, 2022 was the day my son was first “born”. We went under anesthesia together while I was 25 weeks pregnant for 5 hours while they made a miracle happen. The doctors told me everything went well, “textbook” was the term they kept using, and they told me they couldn’t wait to follow along in his progress. They also told me that had we waited to have the surgery until after he was born, it was most likely he would have been paralyzed from the waist down based on how large his lesion was. Phew, that was a hard one to hear. However, he also told me I had the largest uterus he had ever seen in his career…but we will just pretend we didn’t hear that one.
I was in the hospital for about 5 days, stayed near the hospital in Texas for another 10, and made it home just in time to take Marlee trick or treating. Those days in recovery were rough, I am not going to lie. I think this might be the only surgery in the world where you have a person kicking right at your incision from the inside… but hey, he was kickin’, right?
So then we waited. Let me tell you this kid’s birth was like the event of the century. We just couldn’t wait to meet this strong guy of ours who was going to beat all the odds. And on January 15, 2023, our handsome blue eyed boy entered this world a couple hours before we were supposed to be induced. He decided when he was coming into this world and that was just the beginning of him showing us what he could do.
Landon is currently 9 months old and is the chunkiest, sweetest and happiest baby you will ever see. He says “Mama” “Dada” and “Yeah”, has 4 teeth and lights up the room with his giggles whenever he sees his big sister. His gross motors are a little behind for his age, but with PT and a lot of practice, he will get there. And if he ends up walking alone, with braces, a cane or even needs a wheelchair, I’m not afraid for him. He is 100% going to live that happy and fulfilled life that I prayed for him. But not because he MIGHT be able to walk. He is going to have a happy and fulfilled life because he is loved, he is supported, and he is one special little dude. He’s ours and I wouldn’t have him any other way.
Want to know something crazy real quick? I wasn’t even supposed to be at that office where they found his condition. My OB accidentally sent me to a high-risk doctor! As I walked into the ultrasound room, the tech asked me why I was there. You can imagine my confusion. She tells me that my chart said I was having a geriatric pregnancy, however, I was only 33 at the time (geriatric is 35 and above, btw who else hates that word geriatric?!). I asked if I had to leave and she said no, it just means I will give you the type of ultrasound you wouldn’t get until you are 20 weeks, more in-depth. If I hadn’t been sent there when I did, I most likely wouldn’t have known about his condition until 20 weeks in, giving us way less time to come up with arrangements and possibly get the surgery. Something I will always refer to as the 2nd best miracle oopsie of my life. The first? Well, let’s just say Landon wasn’t necessarily planned... but that story is for a different day. ;)
We thank Jess for sharing her and Landon's incredible story! All moms need a village, and Jess, we are privileged to have you as a part of ours.
