Alice

My husband and I had been married for only nine short months before we found out that I was pregnant. We weren’t exactly “trying” for a baby, but we were both thrilled and nervous upon seeing the first positive pregnancy test! The first few months flew by, and despite the pregnancy handbooks and websites that warned of first trimester symptoms like morning sickness and food aversions, I didn’t experience a single symptom! In fact, physically, I felt great. At my first OB appointment, my doctor assured me that my baby’s heartbeat sounded normal, and the ultrasound technician sent us home with images of our perfect little bean. At that point, we were expecting a normal, smooth sailing pregnancy with a perfect little baby at the end of it. (Boy, were we in for a surprise!)

Throughout those first few months, despite the doctor’s glowing reports at each appointment, I couldn’t shake the feeling that something was wrong. I don’t know how to explain it, it was a gut feeling, a voice in the back of my head telling me that something was just not right. I attributed this feeling to the anxiety of beginning a new life chapter. I would tell myself “Of course it’s normal to feel this way, every new mother probably fears the worst.” I would just repeat to myself, “The chances of having a baby born with something wrong are very slim, I don’t need to worry about that. Everything will be okay.”

I think being a school social worker myself made me feel especially nervous about the possibility of having a child with a disability. I have worked with many children with various disabilities––physical, cognitive, speech, and social-emotional delays, just to name a few. It is my absolute passion working with this unique and special population of children, but I have also seen the difficulty the parents of these children experience. I have witnessed parents crying and grieving at IEP meetings, wishing their child could just fit in, could just go through life and school more easily. Which is what made me all the more fearful of something going wrong in my own pregnancy.

We found out we were having a baby girl at our 18 week appointment. A baby girl! The rest of my pregnancy went by seamlessly. Every doctor’s appointment had been normal, all four ultrasounds had also lead my husband and I to believe that this would be a typical delivery and we were excited to finally hold our sweet, perfect little Alice.

Fast forward to delivery: December 28th, 2018.

About 20 hours in the delivery room, hours of contractions, screaming and pushing…in a state of pure exhaustion, I vividly remember the moment that my OB held up Alice for the first time, with the lower part of her right forearm and hand missing. My instantaneous thoughts were a blur of confusion, shock and fear. In that moment, as a new mother, you expect to feel an intense rush of love, excitement, euphoria and positive emotions all around as the doctor holds up your baby. Though I was excited to hold my precious girl for the first time, I was terrified. My mind was reeling with questions that no one had the answer to. Where is her arm? Where is her hand? What happened!? Why didn’t anyone warn us? I remember sobbing with so many emotions behind my tears: crying out of love for this beautiful baby God had blessed us with, crying out of fear that this baby wouldn’t be able to go through life easily, crying out of anger that no one had prepared us for this, and crying out of shame that I was having any negative feelings at all. I kept asking myself Why? Why God? Why did this happen to OUR child?

After speaking with our doctor, and doing a bit of our own research, we concluded that Alice was born with amniotic band syndrome. It’s a weird fluke that happens to 1 in 1,200 to 1 to 15,000 live births. It’s when the inner amnion rips, (usually in early utero) thereby causing fibrous strands to be a danger to the fetus. In most cases of ABS, these strands wrap around the baby’s limbs, causing decreased blood flow, and ultimately causing an amputation or entanglement of those limbs. I reviewed all the things I had done while pregnant—trying to pinpoint the exact moment that something may have gone wrong. Did this happen while we took a trip to the Bahamas when I was 3 months pregnant? Did this happen while I was helping my husband paint our house? Did this happen when I reached over too far to put my socks on when I was 6 months along?

I now know that there was no way to prevent it from happening, and no way to ever know what ultimately caused ABS, which actually brings me relief. I like to think that God had a special plan for Alice and he knew that my husband and I were the best parents for a special baby like her.

I wish I could tell you that processing through our emotions about Alice’s limb difference took only a few days. It wasn’t that simple though. Personally, for me, it took months. I wondered about how she would do simple tasks like tying her shoes, or riding her bike. Mostly, though, I feared how others would view her and treat her. I know how cruel kids (and adults) can really be.

When my husband and I stumbled upon the Lucky Fin Project, it was a turning point in relieving our fears about Alice’s limb difference and her future. Seeing so many individuals with limb differences doing amazing things was eye-opening and inspiring for us.

Alice is now 10 months old. My husband and I have absolutely no doubts about what she will accomplish in her life. She is an unstoppable little baby! She climbs, and crawls and her limb difference doesn’t stop her one bit. In fact, she’s very close to walking! We lovingly refer to her limb difference as her “nub.” Alice has taught me so much about hope, acceptance and resilience, just in the 10 months that she’s been in our lives. I wouldn’t trade her limb difference for the world. Yes, she may get more stares and double-takes from strangers when we are out in public, and I like to use these opportunities to teach others about limb-differences and acceptance. People are always amazed by her. My husband and I look forward to raising Alice as a resilient and strong individual, and we are excited to see what the future holds for our sweet imperfectly-perfect girl.

If I could share any advice with people out there who may see or come across people with limb differences out in public, I would urge you and your children to approach these individuals or their parents with kindness and curiosity about their difference, instead of staring or whispering. I really appreciate when strangers approach us in public to ask about Alice’s limb difference with curiosity rather than pretending not to stare, or telling their kids not to point (that’s the worst).