“My husband, Andrew, and I were blessed to conceive exactly when we were ready. Throughout the pregnancy there wasn’t anything outside of the normal until our 20-week sonogram. We’d settled into the room and I remember feeling a sense of joy seeing our baby, which we learned was a daughter. Prior to the sonogram we’d already had a name selected for a girl, Sloane Eloise. It was pure bliss knowing our sweet Sloane Eloise was growing inside of me!
I remember the sonographer kept returning to her left arm but I didn’t think much of it at the time. We patiently waited in the room to see the OB. She walked in and informed us of our healthy daughter who she believed didn’t have a fully developed left arm. My OB has incredible bedside manner with her compassion and patience. She informed us we would go to Maternal Fetal Medicine (MFM) for a level II sonogram to further explore Sloane’s arm. We’d thanked her and went to the car.
The ride home was long. My husband asked how I was feeling and wanted to talk about Sloane’s arm while I wasn’t ready to process verbally. It felt like a lifetime in the car heading home. I cried. I cried a lot. As a mother I’d felt I’d failed my daughter before she’d arrived. I remember looking down at my hand and seeing my wedding ring, the ring symbolizing my marriage on my left hand, and it made my heart break. Where would she wear a wedding ring? My mind kept drifting to a laundry list of things I believed my Sloane wouldn’t be able to do. I felt hopeless, alone, and empty. After several hours my husband and I were able to have the discussion he was looking to have earlier. We came to the realization Sloane was healthy, what more could we ask for? So, the learning process began.
Several weeks later we had our MFM sonogram appointment and it was confirmed Sloane was indeed missing part of her left arm. They couldn’t define where the end of her left arm was. Again, it was noted she was healthy! We were then referred to the area children’s hospital for an appointment with Neonatology. At this point we felt more comfortable and prepared with the idea of raising a child with a limb difference.
Sitting waiting for our Neonatology appointment any final concerns were eliminated. There was a mother several days post delivery wheeled to visit her newborn who’d just had surgery. I remember hearing her family speaking about the situation and here is when I knew my daughter would be OK. Perspective after our learning from this family, various resources such as Children’s Mercy Hospital and Lucky Fin Club refilled our hope for our daughter’s future.
The only lingering uncertainty remained with myself – would I look at her differently after her arrival?
Catching a cold 33 weeks pregnant led to working from home for some rest and taking some obstetrician-approved medication safe for baby. Being someone who doesn’t like to take medication I was hyper aware of fetal movement, which turned out to be the biggest blessing. About halfway through the work day I called my OB to inquire about no fetal movement and was directed to head to the hospital birth center for further investigation. Note the interesting fact here is the plan my husband, Andrew, and I discussed was to go to the birth center and then head to urgent care as my cold wasn’t getting better. Sure enough ,the urgent care visits never occurred.
Arriving at the hospital they connected me to fetal monitor, or pucks as I call them, and we’d heard and saw the heartbeat. We felt an immediate sense of calm. The nurse came in with some juice and a buzzer, which she placed on my stomach. She informed us she was going to ‘buzz my stomach’ and it was to wake the baby and have her move. I didn’t feel anything but assumed all was well as I sipped juice. Shortly afterwards, the nurse returned saying the heartbeat wasn’t exactly what they like it to be so I would need a biophysical profile at Maternal Fetal Medicine.
During the biophysical profile, which to a non-medical person seems to be another routine sonogram, we assumed she was sleeping, and we’d be heading to urgent care. Once complete, the sonographer left the room to inform the physician she was complete and of her findings. When the doctor came in she started telling us our daughter scored 2 of 10 on her biophysical profile (note the higher the better here) with her only points coming from fluid. She proceeded to share our daughter’s brain was not symmetrical and there was fluid present. I don’t believe my husband and I realized what this meant until she ended with ‘this is her eviction notice.’
Urgently moved back to my room, I was prepared for a c-section while a Neonatologist came into the room setting our expectations for my emergency c-section. We were informed there would be a large team in the room for our daughter should a few things may occur: she may not cry, she may need to be resuscitated, potential transfer to the area children’s hospital, and she would leave the room once stable for further treatment. A few things came true and others didn’t, thankful to God. She didn’t cry, the cord was wrapped around her neck, she was not resuscitated, and her breathing was supported with CPAP. My heart melted when, on their way out of the room, they paused to let me see her and she turned, and I saw her little eyes ever so slightly open looking at me, her mom.
The first time I saw Sloane was magical and fulfilling. My uncertainty didn’t come true, I looked at her as my perfect daughter, Sloane Eloise! Her head ultrasound the day after her birth showed a perfectly healthy brain. After her 30-day journey in the NICU, Sloane came home! We’d arranged for an appointment with genetics, per Neonatology’s recommendation.
After genetic testing it was confirmed Sloane does not have Amniotic Band Syndrome or another genetic cause of her limb difference. Some people have inquired if there is a benefit or need of understanding if there is a genetic reason, which our approach is learning more doesn’t hurt. We’re also planning to continue growing our family and believe it would be helpful to be aware of any potential genetic conditions.
Since her early arrival Sloane has hit the ground running. She’s been to the Children’s Mercy Rehabilitation Clinic where they offer specific days for limb differences. During our visits a team of providers (PT, OT, Orthopedic Surgeon, Prosthetist, etc.) review any concerns we have, expected milestones, and physical assessment before sharing any recommendations.
Prior to her first birthday we started the first prosthetic process. Being new to the prosthetic world we learned a great deal, including the 3-step process. Initially, measurements and a cast are taken of her arm. From there a test socket is created to validate the fit. Once everything is a go, the prosthetic is created, and we go for a fitting. If there are changes they can be made to ensure the device is perfect.
We’ve found there to be varying opinions regarding prosthetics, some parents are 100% against them until the child can articulate they are interested while others believe God made their child this way. For us, we do believe God made Sloane with her ‘little arm’ and we’ve also been blessed with technology to provide tools for her to choose to use as she deems fit. Sloane has taken positively to her first prosthetic.
How to introduce the prosthetic? We followed guidance from OT and the Prosthetist of having a set schedule the same each day for short periods and unique or special toys for this time. Sloane never seemed to dislike her prosthetic except for one time. She was learning to scoot around the house quicker and her prosthetic was catching on the couch and she became frustrated with something new and still unknown holding her back. Otherwise, it has always been positive.
With her young age for a prosthetic, she’s already outgrown her first left arm. We’re in the process of starting round two for a new prosthetic. This time around we’re excited to have a more advanced device as she’s older, some sort of elbow or bend included to help with her new more mobile activities!
In her short 21 months, Sloane has participated in PT for working on weakened core muscles and OT for fine motor skills and prosthetic training. Happy to report she has successfully achieved her goals and is not actively in therapy. Although, for her, therapy seems to be a play date.
There have been a few instances where kids and some adults inquire what happened to her arm. We prefer a conversation to share knowledge over staring. Across the limb difference community there are a plethora of stories of cruelty we know Sloane will face at some point. Our goal is to instill self-confidence to allow her to be comfortable with her arm.
Around the time of Sloane’s birth, I talked to my husband about making my Instagram public. I’d felt it was difficult for me to find above elbow limb different children, specifically young babies and toddlers. We’d decided to share our journey publicly. Our experience has been overall extremely positive. I’ve had mom’s-to-be message me sharing their concerns after learning of their little ones’ limb differences to teens from other countries sharing their story including their parents learning of their limb differences and recommendation for abortion. Connecting with the limb different community has been life changing!
Sloane is now using her ‘little arm’ and her chin to hold items as well as helping hold paper while coloring. She has continually used her left foot to play, which now has turned into holding books while she turns the pages. Sloane has been swimming for over a year now and can climb out of the pool! Every day she figures things out on her own. We try to let her determine her own path to completing things. At the end of the day, we are hoping to raise a strong, independent, women who will continue to share her journey and help educate others!
The name Sloane means warrior. Sloane Eloise lives up to this meaning daily!”
This story was submitted to Love What Matters by Meghan Kudrna of Kansas City, Missouri. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.
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