‘Your baby’s left hand is missing his fingers.’: Mom shares discovering son’s limb difference, power of support community

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“I always wanted children my whole life. When I was younger, I wanted to hang out in my mom’s preschool class and talk about how many kids I was going to have… 4, 5, or maybe 6. I thought I was destined to have a huge family. I had my first baby with an easy pregnancy, and I did the regular check-ups and followed all prenatal advice. Aiden was a chunky, sweet, happy baby which made me quickly want to have my second. I ended up being pregnant with Weston at the same time I was with my first, just 2 years later. 

A Concern With The Scan

I was fully expecting the exact same experience with my pregnancy, but that is not how it happened. At our 20-week scan, I went into my doctor’s office and my sonographer’s face had concern. She was not the same person who had scanned me before, but each time I went, the sonographers were happy and chatty. This time the woman who scanned me asked me to save any questions for my doctor and wouldn’t look at me. I knew there was something wrong, and she wouldn’t say it. 

family sits with their two children, one has a limb difference
Courtesy of Hannah Greaser

After seeing the scan, my doctor quickly called me saying exactly what she saw. She told me, ‘Your baby’s left hand is missing. We need to send you to a specialist as soon as possible to make sure it doesn’t affect his brain or other internal organs.’ This is because there is a high likelihood the two could be related. She called in a favor with a former colleague to have us seen as soon as possible.

We found out this news on Friday, and had an appointment scheduled for 8 a.m. the following Monday. That weekend was probably the hardest weekend of my life. The unknown was what made it the worst. Worrying about the health of my baby, just knowing part of his body was missing and there could be more, but not knowing any of what that meant. During that time, my husband and I kept this news to ourselves, even though we are very close with our families, because we needed time to process. There were a lot of tears and worries which I tried to minimize without knowing the verdict. Regardless, my husband and I decided we were going to stay positive and figure out the resources that could support us giving this baby the best life we possibly could. 

The following Monday we went into our scan. We were taken care of so well by this medical staff, which I have learned later is very rare. We got to look at the details of his brain, heart, and other organs. They talked us through everything they were looking at even though the results of it would come from the doctor. This gave me ease just feeling like I was not in the dark, but I was still concerned while we saw the photos and didn’t know much of what it meant. I could see the absent space where his left hand didn’t match his right hand. 

After the doctor reviewed the scans, he told me this was a best case scenario in comparison to what our concerns were, considering we were only missing limbs. It was not connected to anything internal and his fingers were not present, but there did appear to be a thumb. This doctor told me exactly the name of what we were working with – Symbrachydactyly, a congenital abnormality thought to be caused by an interruption to the blood supply during formation of the limb. In Weston’s case, he is missing the fingers on his left hand and has a smaller palm than his right.

newborn baby with limb difference in the hospital
Courtesy of Hannah Greaser

An Amazing Support System

Every step of the way from there on out, I was informed and advised by people who had experience with high-risk pregnancies or limb differences. I had scans I could send to a best friend who is a very experienced level II sonographer, and who was very empathetic and understanding. She walked me through the situation and reached out to her specialists – she was my rock when I didn’t even know who to process all of the new information. My brother-in-law, who is an orthopedic surgeon with years of experience in orthopedics, told me what to do next. He told me after this baby was born, my best contacts (one of which he did a rotation with), and where to make appointments for the baby’s first evaluation. What helped my worries was that he informed me in my case specifically, surgery could be provided in the future. ‘It’s not the route to take while you have a newborn, and you don’t need to think about it until he is older,’ he told me. My older cousin who is an MD and studied in advanced imaging and fetal cardiology, told me I could call him at any time and we would figure things out, but most importantly he was very excited for my baby to be born and couldn’t wait to meet him. ‘No matter what, it will all be okay,’ he reassured me.

After that experience, I was so thankful for how everyone addressed my situation in a thoughtful and caring way, how each of them who are experienced professionals expressed to me we would figure things out together. It made everything less concerning, and a lot more comfortable to share my diagnosis letter with the rest of my family and friends. 

mom holds her newborn with limb difference on lap
Courtesy of Hannah Greaser

For the rest of my pregnancy, I was free to process this information before my baby was born. When worries did pop up, I would ask and was told how to handle that situation. If he would be teased, or if he would feel confident in himself having a visual difference, would be diminished with references to adults who I either knew or could reach out to that grew up with Symbrachydactyly as well; or contacts to play therapists or a person who I could talk to myself to navigate all of this. 

Approximately 1 in 32,000 to 1 in 40,000 babies are born with Symbrachydactyly, and it turns out my cousin was good friends with one of them. I was told he was the sweetest guy, funny, and very popular in high school because everyone loved him for the way he was. I connected with his mom who was the sweetest person and continues to be a favorite mom who I can always reach out to if needed when Weston is older. 

Because of this experience with each person I spoke about above, I did not have one single worry about his hand the day Weston was born. The only worry I had was that COVID had just hit Houston and we were not sure if my husband could be in the hospital room. I worried I would be alone and I wouldn’t be able to stay awake with this baby all day after an exhausting night of labor. I worried I wouldn’t have someone there to be with me, but when I saw Weston’s hand and put my finger in his tiny palm for the first time, I knew God gave him to me because I was the perfect fit to be his mom. 

boy with hand limb difference plays outside
Courtesy of Hannah Greaser

Connecting With Local Moms

We had many peaceful months being in lockdown, but as soon as we were ready for Weston to safely meet family, my brother-in-law helped me in another way by letting me know of a group called the Lucky Fin Project, where people from all over meet or talk to others with limb differences as a support group. 

I love social situations and I like to throw events and parties, and while it was hard to find a footing to do this in the Lucky Fin group, I did connect with a person who has become a big part of our lives. Katelyn Richter messaged back to my post on the Lucky Fin page, and it turned out we lived just a few neighborhoods away. We talked about meeting, and I was so excited that my son Aiden, who was 2 at the time, and my 6-month-old, Weston, would meet another limb different child for the first time! 

Addison is just a year older than Aiden and when we met her, she and Aiden bonded immediately. They looked just like brother and sister with their bright blonde hair. Katelyn and I were already talking about how we wanted to do something bigger in that first meeting – to gather and support more kids in the area and create a group where kids could have a regular group of friends that would go through the same experiences as they get older. 

two children with limb differences sit together
Courtesy of Hannah Greaser

Due to the timeframe of COVID and how there were still requirements from the CDC in social situations, we decided to put our ideas on hold, but continued to get together with our families. Around the time when we were talking about having an event again, was when Joan Loyd had a daughter with a limb difference as well. I knew of Joan in high school, since I would hang out with her younger sister, and my friend Ainsley was connected in the same group as her – but it wasn’t until Ainsley gave her my number that I talked to Joan. 

Starting No Limbitations Texas

The conversation was easy since we had so many connections, but it was also special for me because it was the first time I had let another mom know who I was referred to and the advice I was given, which made me feel really good to share and connect with her on the level of having a child with a limb difference. When Joan reached out saying she was interested in making an organization to help kids and other families, I added Katelyn to the conversation since we all three had similar goals and wishes to create a space we felt was missing in Texas, and southern states in general. 

Having three people start an organization together can sometimes present challenges. Three different opinions means coming to a common decision can be a bit more tedious. It means we are working around three different schedules and families, each of us with different voices and experiences. But it also means there are three sets of eyes to look at things, three different brains to come up with ideas, and three hearts to give perspectives. We are grateful for the opportunity to work together and make a difference for our kids’ lives and the lives of those we connect with.

Three families of children with limb differences take picture together.
Courtesy of No Limbitations Texas

Our organization now hosts limb different guest speakers to schools in the area, donates books to schools on acceptances of differences, and hosts events for kids to meet others just like them (which many have not been able to prior to our organization). We are working to spread awareness and change the dialogue surrounding limb different stigmas and we want to normalize differences through exposure and education. As moms, we felt like there was a lack of support and knowledge when finding out your child has a difference, and we wanted to help provide a safe place for people to connect and not feel alone in their complicated feelings.

women of group for children who have limb differences
Courtesy of No Limbitations Texas

Weston and these kids will be able to do anything they set their minds to, and now have extra support from some great people who have a limb difference too, that can guide or encourage them through any obstacles! We are so blessed to be one of the families in this community and I can’t wait to watch and encourage Weston as he figures out all kinds of things in his own way!”

Three children with limb differences take picture outside together.
Courtesy of No Limbitations Texas
Three children with limb differences put their affected limbs together.
Courtesy of No Limbitations Texas

This story was submitted to Love What Matters  by Hannah Greaser of Houston, TX. You can follow Hannah on Instagram and No Limbitations Texas’ journey on Instagram and Facebook. Be sure to subscribe to our free email newsletter for our best stories.

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‘He was born that way ’cause of his mother. It’s gotta be her genes, something is wrong with her.’ Rumors flooded about our little one.’:  Mom to son with limb differences urges for kindness, ‘We are all beautiful humans’

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