Our 20-Week Ultrasound Revealed That My Son Doesn't Have A Fully-Formed Hand
“Ten fingers, ten toes?” That is the first question a coworker asked my husband when he returned to work following our 20-week anatomy scan. When Lyndon later shared this, I actually laughed, given the irony of the situation.
“What did you say?” I asked.
“… Actually, no …” (That’s exactly what he said).
I bet that coworker seriously wanted to put her foot in her mouth. Good thing she has a foot to put in said mouth. I have been having these types of thoughts since May 22, 2019. I can’t help but stare at everyone’s fully functioning limbs. It seems like everybody has them.
Everybody except my unborn son.
Leading up to the anatomy scan, I was excited. I counted down the days until I could bring home cute little pictures of my baby boy’s adorable little profile and hear that everything was developing just fine. Neither of those things happened.
On the morning of the ultrasound, I woke up on edge. I said to Lyndon before we left, “I just want confirmation that everything is okay … I don’t want life to be hard for our son.”
He assured me that it would be. Fair enough, as I am the first to admit that I am no stranger to anxiety. But I only felt worse after the scan. The tech was eerily quiet. Over and over, I read the big black letters on the wall stating that the ultrasound technologist could not deliver results. I tried to get her talking … at least tell us what she was looking for and identify each body part for us. Her answers were short. She was friendly and kind, but quiet. I just knew, deep down, that something didn’t feel right.
During the appointment, I laid on the bed with an uncomfortably full bladder, my head twisted unnaturally to the side, trying to see my baby on the screen. She did not tilt the screen towards me to help my view. I reminded myself that I could admire pictures of his little face after the appointment and told myself that she was just doing her job.
Following the appointment, I sat in the car with an envelope of pictures in my hand and said to Lyndon, “I feel uneasy. That was supposed to make me feel better and it made me feel worse.”
Lyndon assured me that all was likely just fine. “Do you really believe that?” I asked him what felt like 100 times in the upcoming days. I then slid my coveted pictures out of the big orange envelope and had I not been sitting down, I may have fallen over. I would be giving birth to a Halloween mask. Not one, not two, but three frightening looking images stared at me. Front views of my precious baby’s face (i.e. skeleton).
“I can’t show my two-and-a-half-year-old niece these pictures! She’ll literally have nightmares!” I shrieked to Lyndon. Even my calm, cool and collected husband looked a little flabbergasted. “Why would they give us THESE!?” I questioned over and over. Clearly something is wrong or they would have had the mind to print us out some typical looking pictures of my fetus … the kind of picture that literally EVERYONE gets after an ultrasound and frames for their cute little social media announcement. Lyndon agreed that this was quite ridiculous and noted that they had indeed taken some normal looking photos.
Me: Was he cute?
Lyndon: Yes, he was cute.
Me: Are you sure?
Lyndon: Yes, I’m sure.
Me: He MUST HAVE A CLEFT LIP! Did you see a distinct lips and nose!?
Me: You really think our baby is okay?
Lyndon: Yes, I really think that.
I had the same conversation with my mom. And my sister. And my friend, Haley, who is expecting 11 weeks before me. Literally anyone who would listen. I tried to make jokes of my fears but my thoughts continued to be anxiety-fueled. I just needed to make it to Thursday when the doctor would tell us that everything was okay and I could laugh at myself knowing that it was all in my head and that I was indeed overreacting.
Except that I wasn’t. After a sleepless night, we sat in our doctor’s office two days later, awaiting the results of our ultrasound. Lucky for us, one of my many anxious thoughts was, “What if the results don’t make it to the doctor in time?” so I appropriately harassed all parties involved.
Our doctor came into the room looking cheery. The poor woman didn’t know that there was an ominous report waiting in my file, or that she was walking into a room full of anxiety. She wasn’t even our regular doctor. I immediately told her about the report and how I am dying to know the results.
“Here it is!” she confirmed. I breathed a sigh of relief. The relief lasted for .06 of a second as I watched her face as she read the report. She finished, took a deep breath, and said, “Okay…”
She then walked us through each tragic line. “You have a low lying placenta. This can move up naturally as you grow, but if not, you will need a C-section.” Lucky for me, I took some time to process this news instead of reading ahead (unlike Lyndon, who was barely listening to this placenta talk).
After answering a few of my questions, she moved on. “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 that. The report went on to state the possible cause may be amniotic banding, although no evidence of bands were detected. Amniotic what?! I’d never even heard of such a thing (I now know that this means that a tear in the amniotic sac, leaving the fetus exposed to strings of sac that can become wrapped around body parts).
My mind was racing. 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 that my child may not have all of his fingers.
“What are the odds that 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.” Great. She then went on to share that the heart structures were not able to be properly assessed. 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 went on to do the routine Doppler and measurements. We learned that we would be referred to a maternal fetal medicine specialist. A gynecologist who completes her own ultrasounds who would go in and take another look. Oh good, more waiting.
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. Neither is your brain, if you’re me. A few hours after the appointment, a sudden thought occurred to me.
“OMG, my baby is swimming around in a death trap of strings!” I could not be placated. I called the doctor and begged the receptionist to leave a message for her to call me back. “And what is this regarding?” she asked politely.
“Ummm…” I hesitated. Was I to tell her about the stringy death trap that is likely my womb? I quickly decided on no and told her “my ultrasound results” like any reasonable person
Our lovely doctor got back to me shortly, which I’m certain my mother and sister were beyond thankful for, as they had since joined the pity party at my house. She told me honestly that she knew very little about amniotic banding, but that she did not think that my baby was in any further danger since he was significantly bigger now than when the banding would have likely occurred. Phew.
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 favorite tiny humans, my nieces, but all I could do was stare at their perfectly formed little hands and marvel at all that they did with them, even at the ages of eight months and two and a half years. When Lyndon returned home from work (yes, he was calm enough to proceed with his workday), we zombied around the house, every once in a while bringing up an aspect of our son’s life that was bound to be harder with only one hand.
It was a good thing that the night prior was sleepless, because I managed to sleep fairly well that night — and to our mutual surprise, we woke up the next morning feeling much more content. We resigned ourselves to the fact that no further information could be given to us until our follow-up ultrasound and let ourselves enjoy (as much as possible) a long weekend with our families. I went back to operating like a fully (okay, mostly) functioning human being until the phone rang a mere five days later on my way to work. We had an appointment the very next morning with our new gynecologist. We were going to get answers. Fight or flight mode reactivated!
One thing that prominently stands out in my mind about the day of our follow-up ultrasound 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 didn’t know was whether or not that was going to be his only difference. This was the question fueling my anxiety as we sat in the waiting room of the labor and delivery ward at the local hospital. Also a contributing factor to my nerves, the reality of sitting in the labor and delivery ward. While at this point in time, the kid’s “exit strategy” was not my biggest worry, let’s be honest — it’s 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.
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 book. 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 casual. 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 40 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 exit of the technicians 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, 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 appeared to be a seemingly isolated incident was 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 1-2% risk of miscarriage/premature labor. We weren’t exactly on the right side of statistics already, so it felt like a one to two percent chance was VERY likely.
Regardless of our decision, she would refer us to genetics so that if we wished, we could meet with a genetic counselor. (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 so few minutes. 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 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 20-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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