Part II – A High Risk Ultrasound

One thing that prominently stands out in my mind about this day is my sureness that our son’s limb difference was not all one big mistake. While many of our friends and family later admitted that they had expected us to call and say, “False alarm! Everything is fine!”, we knew that was not going to be the case. We went to the hospital on May 28, 2019, awaiting confirmation of our son’s left hand limb difference. What we did not know, was whether or not that was going to be his only difference. This was the question that was fueling my anxiety as we sat in the waiting room of the labour and delivery ward at the local hospital. Also a contributing factor to my nerves, the reality of sitting in the labour and delivery ward. While at this point in time, the kid’s “exit strategy” was not my biggest worry, let’s be honest, it is still a terrifying thought for a first time mom! I kept expecting to hear the screams of a poor (I mean, lucky) new mama bringing her child into the world. Thankfully, that didn’t happen… or if it did, it happened quietly. Also, at top of mind was my ridiculously full bladder.

My name was called and just like last time, we found ourselves in a dimly lit room with expensive looking equipment. Unlike last time, there was a screen mounted on the wall meant for the viewing pleasure of the expectant mom and a spot for one’s partner to sit beside the bed. This setup alone was a drastic improvement from our last experience, where Lyndon was across the room and I essentially had to spin my head exorcist style to see the screen.

By the time our ultrasound tech entered the room, my nerves were being trumped by the fact that I was certain I was going to pee on the table the moment she touched my stomach. A full, unable to be emptied bladder is a true form of torture in my books. Lucky for me, the lovely woman quickly measured up my placenta and told me that I could run to the washroom before proceeding with the anatomy scan. Doing so allowed me to focus, once again, on my beating heart, as the technician went through and started measuring every part of our baby all over again. This time around, each body part was identified to us and she didn’t seem too alarmed by my constant barrage of nervous questions:

Me: Is that normal?

Technician: As far as I can tell.

Me: Is that dark spot supposed to be there?

Technician: Yes, that’s a kidney.

Then she got to his hands. “There’s his left hand,” she remarked oddly unremarkably. I looked at it, then looked at Lyndon with curiosity. From what I could tell, it looked pretty normal. Was I wrong? Was this actually going to be a mistake after all? “No wait, that’s actually his right hand,” she added. Never mind. “Hey, look, he’s giving you a ‘thumbs up’, Mom and Dad!” she said with a smile. I marveled. He legit was. Is it possible that our 21-week-old fetus was sending us a sign that all was going to be okay? I hoped so.

His left hand proved to be tricky to look at. Our kiddo kept squirming and moving it while she assessed the situation. Finally she said, “I’m going to call in our most experienced technician. She has been doing this for over forty years.” My heart sank a bit. They were clearly not calling in the most experienced technician to evaluate our perfectly typical baby. A second woman came in and took over the Doppler. She and the first technician began to chat about different types of measurements and the new technician re-measured some parts a different way. My anxiety surged. I thought she was just going to look at his hand… something else must be wrong! I couldn’t stay silent any more. “What are you seeing? Are we about to get even worse news?” The first technician looked at us kindly and said, “I think you’re going to get the exact news that you are expecting to hear.” She then wished us well and told us that the gynecologist would be in shortly to review the results.

The few minutes between the technicians leaving and the entrance of the doctor felt like the longest of my life. I kept looking to Lyndon for confirmation that all was going to be okay and he, so logically, kept telling me that he didn’t know what was going to happen and that we would both find out in a few minutes. He was also more concerned about the fact that he now needed to use the bathroom and was unsure if the one attached to the room was for patient use only. “GO FAST,” I told him through clenched teeth, feeling annoyed that he too had bathroom needs during what was about to be a very important conversation.

He made it out just as our gynecologist walked in the door. She quickly introduced herself and in a no nonsense kind of manner, asked us if we knew why we were here. Uh, yes. She then went on to state that our baby’s left hand has two fingers, the index and pointer finger, and that they may be fused together as independent movement was not detected. Much to my surprise, evidence of amniotic bands were again, also not detected. She then shared the good news; the heart structures (which were previously unassessed) all looked normal, as did his brain. In fact, everything else was measuring within typical parameters, including my placenta, which she did not deem low-lying (perhaps I didn’t have a torturous amount of urine stored in my bladder the first time around?).

My brain raced as I attempted to process this new information. I had spent the last several days researching amniotic band syndrome. You mean that there are other things that can cause abnormal hand growth? As it turns out, there are several things that can cause missing fingers, many of which are far more terrifying than amniotic banding. In fact, she told us that there are “a host of syndromes” that can lead to malformations of extremities during fetal development, BUT the fact that his hand appears to be a seemingly isolated incident is good news. She said that if there was something else concerning detected on the ultrasound, they would be more suspicious that his condition was chromosomal or syndromic and may lead to further complications. My stomach was in knots.

After delivering the facts, she dove into the options for our next steps. The doctors could perform amniocentesis and our baby’s chromosomes could be analyzed for abnormalities. This comes with a one to two percent risk of miscarriage/premature labour (Umm, we’re not exactly on the right side of statistics already… why does it feel like a one to two percent chance is VERY likely!?). Regardless of our decision, she would refer us to genetics so that if we wished, we could meet with a genetic counsellor (Umm… so that I can learn about all the possible awful afflictions my unborn son may face!? This seems like a bad idea for my mental health). She also informed us that there would be several people present at the birth: orthopedics, genetics, plastics, neonatal intensive care unit (Oh good, an entire peanut gallery of professionals. Just what I envisioned.). “Do you have any questions,” she asked after what seemed like far too much information to process in the few short minutes that she was speaking. I couldn’t even form a cohesive thought beyond the one question a doctor can’t answer, “What would you do?” (No, she did not answer that).

I cried all the way home. Technically, the appointment went as well as it possibly could have (aside from the possibility of it all being a mistake). Everything else looked normal! Yet I felt so incredibly sad. I couldn’t help but to think about everybody I knew who had given birth to a typical child. Why was my baby, of all the babies, the one that was going to be born with a physical challenge? Everybody else gets fingers! Why was I destined to live in a state of unknown throughout what was supposed to be a happy and exciting time in our lives? It wasn’t fair.

It still isn’t fair, but life isn’t fair. I am fully aware that there are many parents and children in this world who face incredibly difficult medical obstacles, some that are life threatening, and many that are far more challenging than some missing fingers. I think it is important to recognize that there is room to be thankful for what is going right and to be optimistic that the future is bright, while also leaving space to feel all of the difficult emotions that a future parent feels when they are told that their child isn’t going to be exactly what they pictured. I took the 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. And then I started researching. Not the type of researching I did the first time around. Nope, I planned on heeding the advice of our gynecologist NOT to google the possibilities as it would only create unnecessary fear (She was correct. I broke this rule a single time in the upcoming weeks and literally couldn’t sleep after. I did not make that mistake again).

This time, I started looking for others’ accounts of similar experiences. I religiously listen to a podcast that covers all things pregnancy and parenthood and decided to post a truncated version of our story in the podcast Facebook group. Much to my surprise, within a few hours, thirty women had shared stories of individuals that they knew who were thriving despite missing a limb. I cried tears of joy not only at the idea that there were kids out there living with differences and doing great, but because these total strangers had taken the time to respond to my post. One woman shared a link to a few popular social media accounts of mothers of children with limb differences as well as directed me to The Lucky Fin Project (named after Nemo and his lucky fin! How had I not thought of this!?). I got goosebumps. Thus far, as much as I appreciated the words of support of every single friend and family member in my life, nothing anyone said compared to the feeling that 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 learned of a now twenty-something with a limb difference who published two children’s books featuring a child with a limb difference. I scoured the blog posts of open and honest women who shared their own experiences of a 20-week anatomy scan gone wrong. I reached out to some of these women, who graciously took the time to listen to my story and share more of 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 perspective parent, every single mother shared the same sentiment: the moment that their child was born, they knew that he or she was perfect just the way they were.

I absolutely cannot wait to meet you, little one. Seven fingers and all.

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