“‘Ten fingers, ten toes?’ a coworker quipped when my husband returned to work following our 20-week ultrasound. It’s a common, well-intentioned question to ask expecting mothers, a question I had likely asked pregnant women and never given a second thought to… Until for us, the answer was, ‘No.’ My husband, Lyndon, and I were expecting our first child. A baby boy! After 6 months of trying and one early loss, we were over the moon about starting our little family. Leading up to the anatomy scan, I was excited. I counted down the days until I could bring home pictures of my son’s adorable little profile and hear everything was developing just fine. But for us, neither of those things happened.
During the scan, the tech was friendly and kind, but eerily quiet. I just knew, deep down, something did not feel right. Following the appointment, I sat in the car with an envelope of pictures in my hand and told Lyndon I felt uneasy. He assured me all was likely just fine. Looking for comfort, I slid my coveted sonogram pictures out of the big orange envelope the tech had given me. Had I not been sitting down, I may have fallen over. ‘Our baby looks like a Halloween mask!’ I shrieked. Three frightening-looking images stared up at me.
Frontal views of my precious baby’s face (i.e. skeleton). Even my calm, cool, and collected husband looked a little flabbergasted. ‘Why would they give us these ones?!’ I questioned over and over. Clearly something was wrong or they would have had the mind to print us out some typical looking ‘social media-worthy’ pictures of my fetus. Responding to my incessant questioning, Lyndon repeatedly assured me our fetus was cute and more importantly, he really did believe our baby was okay. I was not placated. Over the new few days, I had the same conversation with anyone who would listen. I tried to make jokes of my fears, but my thoughts continued to be anxiety-fueled.
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I just needed to make it to our appointment, where our doctor would tell us everything was okay and I could laugh at myself, knowing my fears were all in my head. Except my fears were not in my head. Call it a mother’s intuition? 2 days later, we sat in the doctor’s office, awaiting the results of our ultrasound. Our doctor came into the room, looking cheery. The poor woman didn’t know there was an ominous report waiting in my file and it would soon be her job to deliver its contents. The doctor pulled up the ultrasound report on her computer and I carefully watched her face change as she read. She finished, took a deep breath, and started by slowly saying, ‘Okay…’ What she said next changed everything.
‘There is an apparent abnormality on the left hand with only two digits convincingly identified.’ These are the exact words in the report. I know because I read them about 800 times after. My mind raced. I could barely compute what the doctor was saying. I worried about many things in our time trying to conceive, and throughout the first half of our pregnancy, but never once did the thought cross my mind my child may not have all of his fingers. ‘What are the odds this is all just a mistake?’ I asked, numb. ‘It’s possible,’ the doctor said apprehensively, ‘But I don’t want to give you false hope.’ My mind swam. I just stared at random objects in the room while the doctor looked at us with her most empathetic face.
Lyndon rubbed my back, even though he had every right to be as shell-shocked as I was at that moment. We learned we would be referred to a maternal fetal medicine specialist for another ultrasound. As soon as we got to the car, I started crying. I cried on and off all day. When I wasn’t crying, I made the mistake of Googling. Google, in these types of situations, is never your friend. For the remainder of the day, I oscillated between trying to find humor in the situation (I didn’t realize how many jokes you could make about hands!) and completely losing it. I spent time with my young nieces, but all I could do was stare at their perfectly formed little hands and marvel at all they did with them. When Lyndon returned home from work, we zombied around the house, every once in a while, bringing up an aspect of our son’s life that was bound to be more difficult with one hand.
6 days later, following an appointment with our new doctor and a second in-depth ultrasound, we received confirmation of what we already expected. Our son would be born with a left hand limb difference. What we did not know was whether or not it was going to be his ONLY difference. Our OBGYN did not mince words, and told us there are ‘a host of syndromes’ that can lead to ‘malformations of extremities during fetal development,’ but the fact his hand appeared to be a seemingly-isolated incident was good news. We were presented with a slew of potential next steps: amniocentesis, genetic analysis, consultations with orthopedics and plastics, and the presence of NICU staff at the birth. I was beyond overwhelmed.
For a second time, I cried all the way home. I think it is important to recognize there is room to be thankful for what is going right, and to be optimistic the future is bright, while also leaving space to feel all of the difficult emotions a future parent feels when they are told their child isn’t going to be exactly what they pictured. I took a day to feel these difficult emotions. I sobbed. I felt sorry for myself. I felt angry. I called and texted friends and family and broke down each and every time I told our story. But then I started researching. This time, I started looking for others’ accounts of similar experiences. Enter: The Lucky Fin Project, an organization devoted to celebrating individuals with limb differences.
I got goosebumps and cried tears of joy. Thus far, as much as I appreciated the words of support from every single friend and family member in my life, nothing anyone said compared to the feeling I got as I scrolled through picture after picture of smiling, thriving children with various limb differences. Suddenly, our son’s future didn’t seem so dark. These children were perfect exactly the way they were, and they were achieving milestones and meeting goals in their own unique ways. I reached out to mothers of limb-difference children, who graciously took the time to listen to my story and share their own.
I quickly noticed a pattern. While shock, fear, anxiety, sadness, and anger may be among the feelings first felt when the bomb of a limb difference is dropped on a future parent, every single mother shared the same sentiment: the moment their child was born, they knew he or she was perfect just the way they were. Just like that, I was rejuvenated and ready to face the second half of my pregnancy with optimism and a sense of calm, despite the unknowns. I started writing. I immediately knew I wanted to be a relatable support for the next expecting mother whose anatomy scan turned her world upside down.
I started my own blog and corresponding Instagram account, aptly titled ‘The Hand We’re Dealt,’ and started writing about everything that happened next: follow-up ultrasounds, appointments with genetics, orthopedics, and pediatric plastics, but most importantly, about how I was feeling and coping through each step of the journey as my belly grew. Every specialist we saw gave us new knowledge (although often somewhat conflicting), possible answers to the question of ‘why,’ and potential future interventions, but they all echoed the same sentiment: the answers we were seeking would come at birth.
On the last night of my 37th week of pregnancy, I said to Lyndon, ‘This is the first night we are going to sleep and I am not confident we are going to make our due date.’ 3 and a half hours later (1:00 a.m.), my labor began. 6 hours after, with a movie-esque dramatic gush, my water broke all over our kitchen floor. It was time to meet our baby boy. Things moved quickly. We made it to the hospital and after losing my lunch at the check-in desk, I was sent for assessment where it was determined I was already far enough along to go straight to the delivery room! Upon arrival, I enthusiastically welcomed the option of an epidural, and basked in the sweet relief it provided me for the remainder of my labor experience. ‘I think you’re going to have this baby by noon!’ the resident doctor told me with a smile! And then the curveballs started.
I pushed for 3 hours. Our baby’s heart rate rose. The cord was wrapped around his neck. I was exhausted and my team told me it was time to get our baby out. I agreed to an episiotomy. The doctor did what he needed to do. Lyndon later told me when our son’s head came out, the doctor quickly and smoothly grabbed the cord, unwrapped it from around baby’s neck, and continued the delivery without a hitch. A few pushes later, I heard the doctor say, ‘He’s out!’
‘Oh my God. He’s out. He’s here. I did it.’ Lyndon cut the cord. They put my gooey little man on my chest and I felt overwhelmed with emotion. Tears rolled down my face as I tried to comprehend this tiny human that grew inside of me for 9 months was actually here.
I was ready to breathe that huge sigh of relief everyone assured me was to come when I met my baby. I would love to say this is what happened next. Sadly, it is not. Instead of having coveted skin-to-skin time with my baby son, he was whisked off my chest within a couple minutes and taken to the corner of the room to be examined by the NICU team. I stared across the room and listened to my baby cry. ‘What is happening?’ Lyndon went with the NICU team to observe their examination. ‘Is he okay? Is my baby okay?’ I cried. Lyndon didn’t respond. My heart sunk. ‘Is everything else okay?’ I demanded from the bed where I was stuck.
Lyndon looked at me and gently told me there was something different about our baby’s foot. I felt like my heart ripped in two. I wanted my baby back so I could see him with my own eyes. ‘We’ll get him cleaned up and then we’ll take a look at him together,’ my doctor told me kindly. They brought our boy back to me and he lay on my chest while the doctors did what they needed to do to patch me back up. ‘Does he have a name?’ the team asked. Cade Brooks Ellis. He has had a name since day one. He has always been our little Cade. ‘That’s a good, strong name,’ someone commented.
Our doctor unwrapped Cade and I got to see his ‘lucky fins’ (plural) for the first time. His left hand looked much like we expected. He had two digits, but the digits were not fused as anticipated. If I am honest with myself, seeing Cade’s lucky fin for the first time is the moment I feared. I worried what my genuine reaction would be, and if it would be appropriate (whatever this may be). I truly don’t know how to describe how I felt seeing his unique little hand. It just WAS. It was a uniquely perfect little baby hand on my uniquely perfect baby. The doctor unwrapped his foot. My first thought was it looked like he had a little flipper. His foot was flexed, so the top of his tiny foot rested on the top of his tiny leg. He had four little toes, all of which were webbed together. Again, it just was. Uniquely Cade.
And then there was the rest of him. His adorable little face, his soft hair, and his smooth baby skin. He was intoxicating. My heart burst with love. I knew in the back of my mind our journey was not about to get any less complicated. In fact, especially with the discovery of his foot, I knew our boy was going to have many mountains to climb moving forward. But these are not the things I dwelled on in the next few hours. I simply loved on my adorable, baby boy. Fast forward to the present and that adorable baby boy is now a precocious, 15-month-old! I would be lying if I said the last year has been without challenge, but not in the ways I would have anticipated.
If someone would have told my pregnant self the biggest challenges of motherhood I would face had nothing to do with Cade’s limb differences, I never would have believed it, but upon reflection, I now know this to be true (hello, global pandemic, breastfeeding woes, and multiple severe allergies!). In regard to his physical differences, however, Cade impresses his dad and I each and every day as we watch him learn how his body works and as he navigates the world around him. Does he experience frustration more than most children? Likely. While his body is perfect the way it is, he lives in a world designed for the two-handed, which means many things require extra steps and extra determination.
But oh, how his proud little smile melts my mama heart every time he achieves a goal. In regard to Cade’s mobility, over the months, we have been given a huge variety of potential interventions and outcomes, the most extreme being the possible need for amputation and a prosthetic. I have quickly learned while knowledgeable, doctors are not fortune tellers, and the best approach is the one where we simply ‘wait and see.’ And wait and see we did… all the way to this very week when I shed tears of joy, watching Cade take his very first unassisted steps with absolutely zero intervention.
I know Cade’s future is not one without challenges, but whose isn’t? I could never claim to know what it’s like to live with a limb difference, but what I can do as a parent is listen to disabled voices, educate myself, advocate, make connections with others walking a similar path, and most importantly, love my son unconditionally. Our family is now part of the Lucky Fin family, a beautiful group of inspiring, supportive, caring people, and I feel so fortunate to be a part of it.
To any parent out there who has just learned of their child’s limb difference: I know it may not feel like it right now (and this is more than okay!) but your unique little one is truly perfect. There will be a time in the not-so-distant future when you won’t be able to imagine them any other way than exactly as they are, nor will you want to. They will teach you so many lessons, and while they may be the one with a ‘lucky fin’ (or two!), you will be the ‘lucky one.’ I know I am.”
This story was submitted to Love What Matters by Amanda Ellis of Saskatoon, Saskatchewan, Canada.
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