“Late in the evening on July 28, 2019, I saw a super faint positive. My husband had just left town that morning for two weeks for school, so I immediately sent him a picture and asked if he saw the second line. He told me he did not see the second line, but I knew it was there! The next morning, I took another test and it was slightly darker. One of my friends came over to hang out and she asked me to take another test while she was there. Lo and behold, the word ‘pregnant’ popped up after 3 minutes. Again, I immediately sent a picture to my husband. There was no denying the test. After 7 months of trying, we were finally pregnant!
I was so anxious and nervous but overall excited! When I was eight weeks along, I had my first OB/GYN appointment. We saw our little baby via ultrasound and did some blood testing. Two weeks later, I went in for another blood test for NIPT genetic testing. We really wanted to find out the gender early and weren’t really worried about anything else. Everything came back good and we found out we were having a little boy! I was seen again at 16 weeks for a routine appointment. The baby’s heartbeat was great and I was doing great as well.
On the morning of November 20, 2019, my husband, my friend, and I went in for my anatomy scan. I was just under 20 weeks at this point. Almost the whole scan, we were talking, laughing, and so excited to see how much he was moving. The ultrasound tech seemed to be struggling to get pictures, so she told us she’d be right back and went and grabbed another tech. This new tech didn’t say a word to us the entire time she was scanning me. She took pictures of the baby’s heart, brain, and kidneys. She seemed to know what she was doing and we did not think anything of it.
She eventually got up and told us she was finished and she was going to go get my OB. ‘During the ultrasound, we noticed some abnormalities. I’m sorry to tell you, but your baby has Spina Bifida.’ I felt like my heart stopped beating. I vividly remember asking her what that was. As she was explaining, I could see her mouth moving but I could not hear anything. ‘I’ve got him.’ At that moment, I heard God speak to me. He broke the silence and I started crying uncontrollably. The wave of emotions completely washed over me. ‘What was wrong with my baby?’ I kept thinking to myself.
Once I calmed down a little, my OB told us she had already made an appointment with MFM, a specialist 15 minutes across town. We then walked to our car and I hugged my friend goodbye. When I got in the car, I broke down again. After I thought I was okay enough to talk, I called my mom and told her what we had just heard. I broke down again and could barely get the words out. Even though she wasn’t sure what Spina Bifida was, she told me everything was gonna be okay. What I needed at that moment was my mom. My husband called his boss and told them the situation. He told him to take all the time he needed.
Shortly after those phone calls, we arrived at the specialist to get another ultrasound. The girl who did it was very kind and had such a calm spirit. She answered questions I had and made sure to tell my husband and me what she was looking at during the scan. Right before she finished, I asked her if I could have a printed-out photo of my son’s spine. She was slightly hesitant because she wasn’t sure if she could, but she ended up printing it anyway. She finished up and left to go get the OB. ‘You are 19 weeks and 4 days. You have 2 days to decide if you’d like to continue your pregnancy.’
I was asked three times, within 2 hours of finding out the diagnosis, if I wanted to continue my pregnancy. I would’ve screamed, ‘Of course’ from the rooftops a million times if it meant I wouldn’t have been asked that question ever again. My mind couldn’t grasp life without my baby boy, Spina Bifida or not. Later in the evening, my husband and I rushed home and packed up our things to travel to Texas. I swear it was the longest 20 hours of my entire life. It felt like every single song that played was about praying or being a parent. We are Christians, so I had heard the songs a billion times, but some of them didn’t really resonate with me until the day.
We both cried almost the whole drive. We were exhausted and terrified of what the future held for us and Archer. A week after seeing family, we made our way back to North Carolina. We had an appointment set up to see another specialist at UNC Children’s Hospital on December 10th. The children’s hospital was 2.5 hours from us. We were there to see if Archer and I qualified for fetal surgery. I had an amniocentesis, another really long ultrasound, and an MRI. After my ultrasound, two doctors we didn’t know walked in and we knew we didn’t qualify for the surgery before they said anything. ‘His back is just chaotic.’ Those words were burned into my brain.
How could she so bluntly just say this to me? She seemed so heartless. My heart broke all over again. ‘Everything happens for a reason,’ I kept telling myself. He cannot have this surgery for a reason. This surgery is so risky and we weren’t meant to take that risk. I had weekly ultrasounds from 20 weeks to 37.5 weeks when Archer decided he was ready to meet his daddy and me. At 6 a.m. on March 28, 2020, I woke up with contractions. They were already about 3 minutes apart and lasted one minute or so. I told my husband I was in labor and I was going to shower before he headed to our local hospital.
The OB told me I was definitely having contractions but I wasn’t dilating, so they weren’t sure if I was in labor. We decided to go home, pack our things, and head to a hotel close to UNC children’s hospital. It was better I was there laboring than being 2.5 hours away from the best hospital for Archer. Fifteen hours from the first contraction, I was in triage being told they were going to admit me because Archer’s heart rate was dipping during my contractions more than they liked. I got an epidural 3.5 hours after I was admitted and it was wonderful! I was finally able to rest a little, but Archer still didn’t like the contractions.
He liked when I was on my hands and knees, so my nurse had to keep helping me get into that position. I stayed in it as long as I could before my legs would give out from the epidural. I wasn’t dilating quickly enough, so my OB decided to break my water to see if it would help move things along. All. Panic. Set. In. Not even 30 seconds after she broke my water, the fetal monitor started alarming and nurses came rushing in. They helped me get on my hands and knees again, gave me a shot to stop my contractions, then wheeled me to the OR. I was already panicking, but the bright OR lights made my heart sink to my stomach.
I was terrified beyond words. The OB told me Archer was doing better and asked if I wanted to continue laboring. I said, ‘Get him out,’ as loud and quickly as I could. At 3:22 a.m., weighing 4lbs and 15oz, my sweet boy was welcomed into the world. He was taken to the NICU within minutes. I didn’t lay eyes on him until 9 hours later. He was absolutely perfect. The next day, he had surgery to repair his back. Archer was 15 days old when he got to come home. Although we finally got to bring our baby home, we were still at the hospital often and had weekly appointments. He saw neurology, urology, orthopedics, and hematology.
He was born with clubfoot and rocker-bottom foot, so he was casted for 6 weeks at a month old. The casts weren’t our favorite, but they sure did fix his tiny feet fast! By the time Archer turned 6 months old, his appointments slowed down and he started physical therapy. He wasn’t able to sit, even assisted. His hips were very tight. Our goal was to have him sitting unassisted by his first birthday. I felt like it was a very achievable goal but it just felt so far away. His birthday came and he met the goal to sit unassisted. My heart was so proud! The next goal was to roll over and to crawl.
He absolutely hated being on his stomach. There was nothing I could do to help him be more comfortable or to distract him so he could get just a few minutes of tummy time in daily. It was very discouraging. In September 2021, I was scrolling through Facebook and saw a picture Frog Mobility had posted of their son in the GoBro wheelchair. I did some research and eventually ordered it for Archer. It arrived 2 weeks later, and I was so excited for him to try it out! He sat so comfortably in it but didn’t really know how to get around. We grabbed his hands and showed him how to ‘push and let go, push and let go.’
I was recording him on my phone and I literally watched the lightbulb in his head go off! He caught on very quickly and he just took off from there. Ever since he’s gained speed and tricks. He loves to spin and chase our dogs. Once he was finally able to get around on his own, he realized being able to make messes was so fun! Within a few weeks, he learned how to scoot around on his bottom. There was seriously no stopping him! I was so excited for him and so proud, but at the same time, how did these milestones sneak up on me so quickly? He was no longer my little baby. He started to act and look like the average toddler.
At 20 months old, he was finally able to get around on his own and do whatever he wanted. I had to ‘baby-proof’ our house and make sure the dogs’ water bowls weren’t in reach for him. I had to pick up the toys he got into all by himself and I enjoyed every second of it. We waited months for this! It was truly bittersweet. Archer still saw PT and continued working towards the goal to crawl. I honestly was hopeless. I knew it wasn’t comfortable for him to be on his stomach and I couldn’t bear to listen to him cry. After one of his appointments, we were playing with his toys in his room. I laid him on his back and did some pinches up and down his legs. He has partial feeling in his thighs and he thinks it tickles when we do the ‘pinch test.’
He was laughing so hard and I was instantly hit with emotions. He was able to feel a little bit lower than he could before! I wasn’t expecting it at all and I was just so excited! A few minutes later, something was telling me I should also try to see if I could get him to crawl. I wasn’t expecting anything at all, I just hoped he would be comfortable enough to stay on his belly for a few minutes. He noticed a fuzzball from his baby blanket and he started to pull himself towards it! My jaw dropped! Did he really just crawl? Yes. he did! He was laughing the whole time too. It was such a pure moment.
By 2 years of age, Archer was able to crawl, roll over, sit up, scoot, and wheel all on his own. It all started with him learning how to use his wheelchair. I could’ve never imagined the developmental growth he’d have in such a short time just by being able to move around on his own. He’s so strong and truly an inspiration.
Having a child with Spina Bifida has taught us so much, and we are still learning. It has reminded us to stop taking little (and big) things for granted. It has taught us patience and to never give up. From the day we found out about his diagnosis, we knew we had a fighter on our hands. Archer is so much stronger than we’ll ever know. He has overcome so much and has beaten so many odds! Although he needs a wheelchair to get around, he’s just like any other toddler.”
This story was submitted to Love What Matters by Kassey Jagodzinski of Plantation, Florida. You can follow their journey on Instagram, Facebook and TikTok. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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