Sometimes life can take unexpected turns, leaving us challenges that we don’t feel prepared to take on. This is often the case with many new parents anticipating the arrival of a child. But, when it’s unwelcome news from doctors about the health of your baby, that’s when the feeling dread can feel unbearably heavy.
However, for one young couple, they managed to find their way through the darkness of despair to welcome a bright and joyous light into their lives in the form of their newborn baby daughter Ivy, who was born with both arms partially missing.
Here is their story as told by the mother in her own words:
I found out about my second daughter Ivy’s limb differences at 19 weeks. My husband was away for work, so my mother and sister came with me to my ultrasound appointment to help corral my toddler and get a glimpse of the baby. I remember that ultrasound took forever — but the tech told me that the baby’s legs were crossed and in a difficult position to determine gender. I thought nothing of it. We all commented on her cute little toes and got pictures printed, and we didn’t even notice that there was no mention of her hands.
The next day, I had an appointment with my midwife. About an hour before my appointment, I got a call from her.
She told me there were significant findings on the ultrasound. She said I should bring my husband with me, and that I should find someone to watch my 2-year-old daughter. Immediately my heart dropped into my stomach and the tears started falling. Something was terribly, horribly wrong, I just felt it. I called my mom, as my husband was still out of town, and she dropped everything to bring me to that appointment. From the moment my midwife called me, up until we arrived at her office, I don’t think I stopped crying. I was terrified I was going to lose this baby. As my mom and I sat in the parking lot of my midwife’s office, preparing to go in, my mom looked at me and said, “Vaness, whatever it is, we’ll get through it.”
When we walked into the waiting room, my dad was there waiting for us. My mom had called him and asked him to come too. I was grateful for the support. I don’t remember if any words were said while we waited, I just remember being unable to stop crying. Sometimes silent tears, sometimes not… but they never stopped. When we finally sat down with my midwife, she went over the scan.
First was the possibility of a cleft lip. Upon hearing this, my heart lifted a little bit.
I began to feel hope. Was that all? Just something small, something cosmetic? Was she actually going to be okay? In that moment, I told myself that maybe some people would care about a few minor things, like a cleft lip, but I wouldn’t as long as my baby was heathy. But there was more.
Next, one femur was curved and shorter than the other. Okay, harder news to take, but again, I felt some hope that maybe that was all. My ultimate fear, after all, was losing her. I was worried that the pregnancy wasn’t viable. That there was something she wouldn’t be able to survive. That I would give birth and lose her days, hours, or minutes after meeting her.
The fear came rushing back, as this was a major organ — more along the lines of what I had been worried was wrong. Something big, something life-threatening, something terminal. But still… a heart issue? There are machines and technology that can help a heart beat, that can fix a heart, aren’t there?
This felt like a punch to the gut. It stole my breath. It keeled me over and the sobs tore out of me, and visions of my perfect little baby shattered. No hands? I had never heard of this. It wasn’t on my radar. It had never crossed my mind, never been a fleeting fear or worry. I had just assumed that she had all limbs, that all pieces were there. I was devastated. I didn’t know if this was something I could handle, I didn’t know if things would be okay.
I do remember, in the quiet aftermath as we sat in that office, my dad saying to me, “She’s going to be a blessing to our family. I think our family needs someone like her. She is going to teach us so much.”
It’s hard to write this, to relive these emotions, because I feel guilt for the fears I had, for the hopelessness I felt.
But I’m getting ahead of myself. And those feelings were a vital part of how I spent the next few months processing the information, and I truly grieved. Denial, guilt, anger, sadness — I experienced them all.
After the appointment, as I stood in the parking lot with my parents, my dad offered to go pick up my husband from out of town and bring him home (lucky for us, my husband works for my Dad, so getting a few days off was no problem, nor was bringing him home early from a job). I waited until my dad was minutes away from my husband’s job site before finally making that difficult call. I had no idea how to tell my husband about the ultrasound findings, and I hated that I had to do it over the phone while he was three hours away. I think it was the hardest phone call of my life.
I don’t remember much about that phone conversation, except telling him that she was missing both forearms and hands. And I remember the note of disbelief in his voice when he said, ‘What? No hands?’ I then told him that my Dad was minutes away from picking him up and bringing him home.
I spent the entire night researching prosthetics for babies and children, looking up videos of other child amputees, and I began to feel a shred of hope. We got referred to Vancouver Children’s Hospital right away, and an appointment was set up for the very next day, where we’d have a detailed hour-long ultrasound and meet with perinatologists, medical geneticists, and genetics counselors. I thought that meant we were getting answers that day — that the doctors could tell me why this happened, what caused it, and what the next step was. But the appointments were severely disappointing in that regard, and if anything, the doctors created more questions for us than answers, and tainted that whole experience with so much negativity.
That someone had told us how beautiful and perfect our little girl would be, that she would smile and giggle and live a life filled with so much love. I wish I knew then what I know now. I wish I could take away all the worry, pain, fear, and heartbreak I felt.
I felt like the doctors were telling me that it was over. That her life wasn’t viable, that we had lost all hope of bringing home a baby. I was shocked when the doctor suggested we terminate. THAT had never crossed my mind, but here they were, offering it. When my husband and I started to express that we wanted to keep her, the medical geneticist said, briskly and brutally, “But think about her quality of life. She’s going to have no hands.”
I remember asking about the War Amps, or prosthetics, looking for any sort of alternate solution. The geneticist was quick to dismiss those options — she knew nothing about the War Amps, and she said prosthetics would never be an option, because she was missing both hands. I didn’t understand why.
They gave us a moment alone to talk about our options, and I remember feeling so much doubt. I’ve always been pro-choice, but knew I could never personally have an abortion. But in that moment, I felt doubt. The doctors had made me feel guilty for wanting to keep my baby, had made me doubt all my abilities as a mother to care for and nurture my baby. What kind of life would I be giving her? Would she really have no quality of life? But as we had a moment of privacy, I remember looking at my husband, having so many questions and no answers. But he so firmly, passionately, and emphatically said to me, “I’ll do whatever I have to do to take care of her. I’ll build her anything. I want her. I’ll do whatever it takes. I’ll take care of her for the rest of her life.”
And I knew in that moment, he was right. She was ours to love and protect, and we did already love her. And I knew, without a doubt, that with my husband by my side, we could do this. I had no idea what it would look like, but I knew this wasn’t the end. We declined an amniocentesis, as there was a risk of miscarriage. And we knew we wanted to keep her and didn’t want to add any further risks to my pregnancy.
I remember hugging my husband and asking him why this was happening to us. But as the final weeks and months of my pregnancy passed, I stopped asking myself that. I was still paralyzed with fear and worry for the remainder of my pregnancy, but my perspective began to shift. Things just started to make sense, they started to fit. It felt right. I felt like the Universe chose me, out of millions of mothers, to be Ivy’s mom. I even think she picked me herself. She saw me and said, “Yes. I want her. I want HER to be my mommy.” The Universe knew I would love her. That I would fight for her, advocate for her, and be everything she needed from a mother. I felt like my entire life had led up to this, had prepared me for this: to be Ivy’s mom. Maybe that’s why I’m such an empath. Maybe Ivy will need a mom who is empathetic, compassionate, and loving. Maybe that’s why I’ve advocated for others in the past — it was all practice for Ivy. But then things shifted again.
And instead of thinking that Ivy needed me, I started to realize that I’m the one who needs her. She saw me and said, “Yes. She needs me. She needs me to be her daughter.” It’s not Ivy who needs me. I need her because she completes me, completes my family, in ways I never realized. She’s a balm to my soul, a salve to past wounds. Ivy will teach me things I didn’t think I needed to know, or maybe didn’t want to know.
She just couldn’t wait to join the world. Or maybe she knew that I needed her here, needed to be reassured that she was going to be okay, safe in my arms at last. The moment I birthed her and held her in my arms, I felt so much peace. And when she opened her eyes and looked at me for the very first time, I knew she was exactly where she was meant to be.
It’s not as hard as I thought to tell this story.
I’m holding my precious little girl in my arms, and as I reminisce about the moment I found out about her arms, I look down at her perfect little arms and smile. I love them. I love her arms, and I love her. I wouldn’t trade her for any other baby in the world. She’s mine. She was meant to be with me, and I was meant to be with her. And we fit so perfectly together.
Since coming home, Ivy has grown leaps and bounds and met all of her milestones on time so far.
Just a few days ago, she rolled over, and she hasn’t stopped. I wish I could send the videos of her rolling to the doctor who suggested we terminate. I wish I could show her Ivy’s beautiful smile, and how it lights up not only her whole face, but the whole room. I wish that doctor could hear the magical sound of her giggles.
What’s funny is that babies with hands look weird to me now, because this is our new normal.
And that’s the thing — “normal” is all relative. We’re all different in so many ways, and that’s okay. And I hope I can teach my daughter that. Some people have blue eyes, some have green. Some have blonde hair, some have brown. Some are born with hands, some without. And I hope I can always impart to her that her life has meaning, has value, and will always be filled with so much love, regardless of her appearance or abilities.
One thing I know is that I’ll never question her quality of life.
I can’t imagine our family without Ivy. I can’t imagine her not being here. And I know that we’ll have enough love for her to make up for anything she’s lacking (although I don’t view it as her lacking anything at all!) And because she was born this way, I’ve been told that she won’t often feel that she’s missing anything. This is all she’ll ever know, and she’ll never know any different. She’ll never know what it’s like to have hands, so she won’t experience that feeling of “loss.” She’ll grow and adapt and always have her own way of doing things.
I feel so much hope for her future.
There are still days where the worry and fear take over, where I worry about those days at the park when other kids notice and point and stare and make comments that she’s “weird” or “creepy.” And I’m worried that I won’t say the right things or do the right things to help teach her that she’s perfectly unique. I hope I can instill in her all the confidence she needs in herself to take on the world. I’m worried that in that regard, I’ll fail as a mother. But I am going to try my hardest and give it everything I’ve got.
At first, it was difficult for me to open up and share her story.
I didn’t want her exposed, but now I just want her to feel loved and supported, and I know that a big part of that will come from this online community. Already we’ve found the Lucky Fin Project (@lucky_fin_project), The War Amps, and we’ve connected with countless other amazing kids (and parents of kids) with limb differences. There are SO many resources out there for kids with limb differences, contrary to what the doctors told me. I want Ivy to know she has an army behind her. And I also want to help normalize her differences so the world can become a more inclusive place. All I know is that, at the end of the day, this story isn’t about me. It’s all about her. And she is absolutely, unequivocally, undeniably perfect.
