“I still recall the night I laid in bed crying silent tears. Careful not to wake my sleeping children. I remember biting down on my lip hard, a desperate attempt to quell the ache building up deep within my chest from turning into screams of despair. Nested in the crook of my arm, my newborn daughter slept peacefully, blissfully unaware of the chaos that surrounded her. I leaned in, inhaling her. I wondered, would I make it to her first birthday? Would I live long enough to exist in her memories? Would she ever know how much I loved her?
These relentless thoughts nearly destroyed me. My heart was breaking, no it was broken…both figuratively and literally. I was in heart failure, at risk for sudden death…no promise as to whether or not I would recover or continue to decline. I was exhausted all the time, daily tasks seemed insurmountable. I was just a shell of my former self. I was not the same mother, wife, or friend. My world had changed, I had changed.
Days and eventually weeks passed, full of fear and malaise. For months I fought and healing eventually followed. 2 years later, my newborn daughter had grown into a toddler, and ‘mom’ wasn’t a story but a constant in her life. My heart had fully recovered and I was in remission. I had the second chance at life that I begged, pleaded, and went to war for.
My doctor simultaneously congratulated and cautioned me, I had recovered but would be on medication for the rest of my life. She then warned me I could never have another child as the risk of relapse was far too high. While this news wasn’t surprising, it stung. I was just 25 and suddenly my ability to have children was taken from me.
However, I had little time to grieve this loss, I had 3 children who needed me then and now. With the worst behind me, I looked forward, oblivious to the fact that I was yet to face my biggest battle. Life went on, new memories were made as the days came and went. Then all of a sudden time slowed as I felt the familiar rumblings. Like the smell of rain on wet cement, all the memories flooded in. The vivid dreams, sensitivity to smell, and lower back pain, it was all so painfully familiar. I was pregnant. I stood there, my hands trembling. I recall blinking hard as if my eyes were simply betraying my consciences, but still, the positive test results remained.
I felt as though I had swallowed a brick. I had promised myself if I ever got pregnant again I would terminate. It wouldn’t even be a question but there I was questioning everything. My husband and family begged me to end the pregnancy. My doctors insisted I terminate. I was intensely ridiculed by my cardiologist, who told me I was foolish and selfish, ending the conversation with a consolatory congratulations. I left his office in tears. Feeling utterly defeated I booked an appointment to terminate the pregnancy but I never made it into the car, let alone the doctor’s office. I couldn’t shake this thought that repeated like a buffering disk in the back of my head, ‘It’s a girl, and will all be okay.’
Despite my immense anxiety I ultimately decided to continue with the pregnancy. Just like that, my mind had changed. Like a gust of wind, my thoughts had shifted course, moving in an entirely different direction. Fortunately, in the following months, my pregnancy remained fairly uneventful and my body seemed to be tolerating pregnancy. Further testing showed my heart was functioning within normal limits. I was tremendously thankful.
The morning of our anatomy scan I felt uneasy. I just couldn’t shake this feeling something was wrong. I chalked it up to nerves having received heartbreaking news years earlier at this very same appointment with our first daughter who was unfortunately stillborn. My husband did his best to comfort me as I nervously picked at my nails.
We walked in hopeful but as the scan went on, my doctor’s chippy demeanor waned. I felt that familiar wave of panic creeping in. The doctor confirmed my fears when she finally spoke again. As I heard the words fall from her mouth, ‘We found some abnormalities.’ my vision blurred and suddenly her voice sounded miles away as if I was deep underwater. My mind automatically jumped to the worst, were we losing this baby, too? How could this be happening again? Surely my heart could not handle this, not again.
My heart was heavy, as I stared at the ultrasound photo. I had very little knowledge of Spina Bifida and at that moment I could hardly remember the string of information the doctor had offered me in between tears. Our daughter’s back had not closed, the nerve endings of her spine were exposed and she was leaking spinal fluid causing her brain to herniate. We were told she would likely never walk, she would need a shunt and she may have brain damage. The list went on and on. She gently offered termination, and eventually noted surgical options to repair the opening on our daughter’s back.
We gathered our belongings and our single ultrasound photo and drove home in silence. In that moment it was nearly impossible to see past my grief. We had come this far, there must be a reason I thought to myself. Our focus shifted as we thought about what would result in the best outcome for our daughter.
Several days later our doctor called and she mentioned a local trial taking place, but at this time just one mother had undergone this new procedure and she wasn’t sure how safe it was.
With so little information, we quickly wrote it off. We spent the following weeks attending various appointments, reaching out to the other parents of children with Spina Bifida, and eventually planned for a postnatal closure. Late at night, after the kids were in bed fast asleep my husband and I would spend our evenings discussing the future. We would raise our little girl to be strong, independent, and confident. We had a plan and now all we had to do was wait for our newest addition to arrive.
Despite having already made this plan, the trial kept popping into my head. I wanted to know I had at the very least looked into every possible option. After a great deal of conversation with my husband, friends, and family, I scheduled an appointment with the fetal surgeon. I worried intensely as to whether or not my heart could withstand both pregnancy and surgery. I nearly canceled our appointment on multiple occasions. I told myself we were not likely to qualify and perhaps that would be the answer in itself, but I needed to know we at least tried.
It was at this point that things began moving at warp speed. Each day I had a new appointment. I was poked, prodded, scanned, and passed back and forth from hospital to hospital. After a great deal of testing on both the baby and my heart, we were told we did qualify. They scheduled our surgery for the following week. I was scared and surprised but also incredibly optimistic.
I was just 25 weeks pregnant when we checked into labor and delivery for surgery. I still recall the team of nurses and doctors coming in and out of my room as they prepared me for the procedure. They explained that they would be inserting little surgical instruments into my stomach to repair the lesion on my daughter’s back laparoscopically. The NICU would be on standby in case our daughter needed to be born in the middle of the procedure.
Just before they rolled me into the operating theatre I kissed my husband goodbye. I don’t think I had ever been more nervous in my life than I was at that very moment. I was terrified something would go wrong, that myself or our daughter would not survive. I imagined my husband a widower at just 28, with three children to raise. But just as quickly as the thoughts came, my eyes closed and the surgery had begun. I woke what seemed like only minutes later to the sound of my sweet baby’s heartbeat echoing on the doppler. I could feel the warmth of my tears as the nurses explained everything had gone perfectly. We were the fourth mother and baby in the U.S to receive this new surgery.
Our time in recovery was rough. My lung had collapsed which made breathing challenging. I had more IVs placed than I could count and I was in a great deal of pain. I worried about my heart, had I overdone it? Had I pushed my body too far? Then just before discharge, we got to see our daughter via ultrasound. The doctor could see she was already making visible improvements just two days after surgery. It was all worth it.
We went home, ecstatic over how great our little girl was doing. While recovery was slow, I felt a little bit better each day. I was encouraged when our daughters’ kicks became progressively stronger. All seemed to be going well but then 3 weeks post-op, I woke with contractions, pain, and bleeding. My husband rushed me to the hospital. I still remember the drive so vividly. The sky was dark and grey, the air cool and melancholy. My hands gripped tightly to various objects around the car as waves of pain moved through me. I was very thankful as the roads were unusually clear for LA rush hour.
When we arrived at the hospital I had to go in alone while my husband waited with our toddler. Minutes after my doctor walked in, he called a code on me. I frantically texted my husband from inside the triage room, ‘Emergency C-section,’ ‘Bleeding,’ ‘They are calling the NICU,’ ‘I love you.’ My placenta had abrupted and I was losing blood fast. Being only 28 weeks pregnant, the doctor warned me the baby may not survive. They rushed me to the O.R. As soon as they got me on the operating table I felt another gush of blood and they lost my daughter’s heartbeat. I froze in fear as everyone swarmed around me.
As I lay there, my body shook uncontrollably. My high-risk OBGYN happened to be at the hospital that morning and stood by me holding my hand. I recall wishing they would put me under or that I would pass out, I wasn’t sure I could handle the intensity of the fear building inside me. Just then I heard a faint squeak. She was alive and she was crying. My doctor leaned down and kissed me on the forehead. She then quickly stepped away and when she returned she had her phone out and on the screen, I saw a photo of my tiny daughter. I watched helplessly as they rolled the isolette passed me. They sent her to the NICU and I was moved to the ICU where I received multiple blood transfusions.
My husband texted me photos, videos, and updates of our daughter as I lay in bed recovering. He let me know they would be transferring her soon to the local children’s hospital. I spent the next four days, wishing time away. My entire body ached to be reunited with my baby. As I sat alone, it felt painfully reminiscent of the day our first daughter was stillborn.
On day four, I left the hospital empty-handed once again. Despite still being in an incredible amount of pain, we made the hour-long drive out to the children’s hospital. Unable to walk, my husband wheeled me in to see her. I could hardly contain my excitement as he pushed me down the corridors! When we arrived at her room I remember looking into the isolette. There she was, my Amelie Lucca, weighing just 2 pounds and only 14.5 inches long. I could not believe how small she was.
We made the drive back and forth each day for three very long months. Each day brought with it incredible highs and very dark lows. We faced setbacks but also met milestones with immense joy and delight. I cried both tears of heartbreak and of joy. The halls that once felt so foreign now felt like an extension of home. We knew the ins and outs, faces became familiar, this was our new normal. As time ticked by, our daughter grew, one ounce at a time. The day before her due date we got the all-clear and we finally got to bring our newest addition home.
I now look back at this time in our lives and while the road was riddled with potholes and uncertainty, I know we made the right choices. Our once 2-pound baby is now a strong-willed, beautiful, and charismatic 1-year-old. She has continued to defy odds each and every step of the way. Despite being 3 months premature and having Spina Bifida she is right on track for her age and has even begun taking steps. The little girl they said would never walk has full movement down to each and every one of her 10 tiny toes. She is the little girl I imagined from the very start and everything was okay.”
This story was submitted to Love What Matters by Victoria Pampanin Reyes. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read more touching stories like this:
‘My mom noticed a hole above my tailbone she could fit her pinky into. The doctors told her, ‘As long as it’s covered with skin, it’s nothing to worry about.’: Woman with spina bifida and fibromyalgia suffers from ‘back attacks’ and ‘wild symptoms’
‘We’ll operate to decrease her brain damage. Nevermind. BMI is too high.’ I was too fat to save my baby.’: Mom births baby with ‘severe’ Spina Bifida, says she is ‘not disabled, just does things in her own way’
SHARE this story on Facebook to help celebrate unique and beautiful differences!