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This page features a collection of personal stories and experiences about congenital hand differences written from each person’s own perspective.

We invite you to explore, there is a community here for you and your family!

Parent Stories

The Kelly Family

The Kelly Family

Hello, I am Pam Kelly, I am a wife and mother of 3 children.  Our youngest child, a girl, was born with a CHD.  Although our children are all grown now, a couple of things we especially enjoyed doing as a family while they were growing up were taking vacations all over the US (and  sometimes even abroad) plus supporting our kids as they participated/acted in community theatre and school-related productions.

How were you and you family referred to Shriners Hospitals for Children?

We were referred to the Shriners Hospitals for Children – Chicago when Nicole was a baby, by a member of our local Shriners Club.  Nicole has ‘aged out’ now, but benefitted from the Shriners off and on throughout her childhood years.

What is your experience of having a child with a congenital hand difference?

My experience as a mother of a child with CHD is that at first I felt a lot of worry about how she would fit in with others as she grew up, plus I felt a lot of guilt (I must have eaten something or exercised too much or SOMETHING to have caused this—Not true, but true feelings).  When she was a baby and we were out in public, I explained her difference to strangers before they could ask, which made them more comfortable to talk and not turn away. The awesome truth is, by the time she was in school, I realized how ‘just fine’ she was. In fact, she was better/stronger than ‘just fine’, as somehow her difference made her more determined and more dynamic.

How has your child and/or your family adapted to activities?

Nicole just naturally and intuitively knew how to compensate.  She even tied her shoes perfectly in kindergarten.  My husband showed her how HE tied his shoes and she just figured out how do it her own way from seeing the process.

What were things you did not expect in raising a child with congenital hand differences?

I did not expect the stares from complete strangers, or, maybe I should say I didn’t ‘feel’ what that feels like until to you, and especially your child, until stares are aimed at your baby!  It certainly built compassion in me in a way nothing else could have done for people with any kind of difference, physical or mental! Regardless of our differences, we are all awesome and perfect and special!! But, on the other hand (HA!) I also didn’t expect her to adapt so well to all the things I’d thought might be issues, like riding a bike or driving a car, or doing her hair, etc.  None were issues!

What would you like new parents of children with congenital hand differences to know?

I would like new parents of children with CHD to know how awesome and perfect and special their child is, and the sky is the limit for their abilities!  NEVER sell them short on what they dream of accomplishing!  When Nicole came home one day during high school and told me she wanted to test to be a lifeguard I said, “Okay—That sounds like fun!”, but what I THOUGHT was, “How will she ever be able to do that?” Of course, she passed the test and was a lifeguard at our local pools for several years! With your support and encouragement and expectations that “they CAN” your child can be and do everything they dream of! I say this as the proud mother of Miss Iowa 2013 😊!

The Lichti Family

The Lichti Family


When our family decided to adopt two girls with CHD, we had time to consider what obstacles there might be and how we would adapt. Fifteen years later, we can say that most of our concerns were unfounded. Our girls have found a way to do everything they want to do, including horseback riding, gymnastics, and holding down part time jobs at a local ice cream parlor. They fit seamlessly into the active life we were already enjoying with our 3 biological kids with few exceptions.

Since we were homeschooling, the girls didn’t have the typical “school” experiences/challenges that they might have otherwise faced. They made friends easily and we found that most kids are very accepting of differences. Both girls pursued hobbies outside of school that broadened their circle of friends. One of our girls loves horses and the local 4H made it possible for her to pursue this passion. She’s been competing for 8 years and her coach has told us that she literally can’t figure out how our daughter is able to do what she does! One time a horse ran away with her and because she didn’t have 2 hands to pull back on the reins, she couldn’t stop it. Eventually, she let go and allowed herself to fall to the ground, uninjured. She got right back on; she’s fearless! Our youngest daughter joined a local gymnastic performing team that includes kids with various physical differences, which has grown her confidence.

As they’ve become teens, they have both learned to drive, hold jobs, date, and enjoy very full lives. They love to travel and have faced very few barriers. One of the few “hiccups” we encountered, was at a local amusement park in Southern California. Our daughter was with a group of friends, and was denied entrance onto a couple of rides because of her CHD. She was embarrassed at being singled out, but her friends helped her shrug it off. We realize now we should have looked up the specific rider requirements on each ride to avoid any misunderstanding, but at the time, it never even crossed our mind.

We’ve only made a few visits to Shriners Hospital for Children ­– Northern California as our girls did not require surgery. We did have one prosthetic device made to help with horseback riding, but it ended up being more cumbersome than helpful. However, we did make the connection that allowed the girls to be part of Camp Winning Hands for the past ten years! They’ve made lots of friends and best of all, gotten to meet kids with challenges just like them.

We’ve learned that “normal” is relative, and our girls have exceeded all of our expectations. There are days they wish they could just blend in and look like everyone else, but they do not allow their differences to define them. That’s a huge life lesson for all of us.

The Tuberty Family

The Tuberty Family

Hello there, we are the Tuberty family. I am Dennis, my wife, Katheryn and I have been married 31 years. We have two daughters, Sarah and Madeline. We enjoy gathering for Sunday dinners and barbecues, family vacations, camping trips, swimming, horseback riding, watching movies and living history outings.

How was your family referred to Shriners and how long has your child been a patient?

We were referred through friends who knew of a Shriner who has previously sponsored a child to the Shriner’s Hospital for Children – Northern California when it was still located in San Francisco.

What is your experience of having a child with a CHD?

Sarah was our first child. She was special from the beginning, strong, bright, and curious and independent. When it came to do tasks for her Sarah always said, “I can do it myself.” After we would show her how to do the task, she was very determined to master these tasks, such as tying her shoes at 4 years old. She would watch her mother do it and then went her room and practiced until she could do it herself.

After we left her alone and she would always find a way to work each task out on her own. We treated her as if she had no disability. We treated her as if she was normal.

Raising Sarah was a cake-walk, my wife and I were concerned on how she would do things, but then she just did them. She was out mucking horse stalls, riding horses English style, and then she started jumping horses. Sarah made it really easy for us. We never really worried about her, took things one day at a time, and supported her in the things she wanted to do. We are proud and amazed at of all the things she accomplished.

How has your child and/or your family adapted to activities?

Sarah’s attitude made all of the difference. We adopted to her as she developed ways to undertake each task. Washing her face, hair, getting dressed, grasping crayons and using both hands to gather up pencils or peas on her plate.

What are things you did not expect in raising a child with a CHD? How did you manage these unexpected things?

We did not expect her attitude, her passion for independence. We followed her lead as how she wanted to be treated.

What would you like new parents of children with CHD to know?

The caregivers, staff members, and surgeon Dr. James were wonderful to our child Sarah and to each of us. They were encouraging and supportive of us every step of the way through multiple surgeries.

As for advice, treat your child as if they are normal, challenge them and encourage them.

The Warkentin Family

The Warkentin Family

We are the Warkentin Family. We are from Northern California and we have three wonderful kids. We come from a musical background so a lot of what we do as a family has some musical element to it. Our kids all love to sing and some of them dance. Our son Elijah has a great ear for music and enjoys the technical side of music- mixing sound and creating music in garage band. We enjoy a lot of local activities in our city that we collectively do as a family. We love to go kayaking together on our beautiful lake and go sledding up in the mountains together. We like to read together and are majorly into family game nights- our favorite games are Monopoly and Settlers of Catan.

How was your family referred to Shriners Hospitals for Children – Northern California and how long has your child been a patient?

Our family wasn’t referred to Shriners Hospitals for Children – Northern California. When my son was born, I spent a lot of time searching the internet for answers and help. I found Shriners Hospitals for Children – Northern California website and decided to take a chance and apply to be seen. Elijah was accepted and his first meeting with Dr. James was when he was 4 months old. He has been a patient for 12 years.

What is your experience of having a child with a CHD?

Having a child with a CHD has been an incredible journey. I knew that I would have to fight for him; I would have to fill out endless forms and papers, I would have to do multiple hospital visits and surgeries. I knew that I would have to invite therapists and specialists and strangers into my home to evaluate my kid. I expected that as he got older, I would have to navigate school with him and teachers and kids, that I would have to teach him how to deal with stares and comments and questions. I expected that I would have to comfort him and talk him through challenges that other kids might not have to face. I expected to cry a lot; I expected he would cry a lot too. I expected to feel isolated and alone. Those were all the things I worried about, walked through and processed.

What I didn’t expect; I didn’t expect my son to be so well loved, so cared for and so seen in the world. I didn’t expect the community of other families just like ours to rally around us. I didn’t expect him to find alternative ways to do things. I didn’t expect him to grow into this charming, warm, amazing, caring human being who was built to show the world that different doesn’t have to be a negative thing. I didn’t expect every teacher he had to love and care for him and protect him and, at times, go toe to toe with others who disrespected him. I didn’t expect his friends to not really see his hand difference, but just to see him for who he is. I didn’t expect the world to look different, to be different because he was in it.  Having a child with a CHD has been the most challenging, difficult, amazing, incredible honor of my life. I think you could say that about having a child in general.

How has your child and/or your family adapted to activities?

We love to play card games and board games. This is sometimes challenging for Elijah to keep his cards private (so his brother can’t cheat and see them). We have a cardholder that is a stand and allows him to put all his cards in the holder and look at them and keep them private. He loves it and it makes such a difference.

Caribeaners have been our best friend. We use them to put on our dog’s leash so that he can easily put it on and walk the dog. When he was younger, we used them on his belt loops on his pants to help him pull them up. And we keep a pack of them in our house to use when we need to fashion something to make it work for him. Every year I buy him a new pair of gloves and cut the right fingers off on each glove and sew new seams on them- you can’t even tell the difference. We use magnets for his shoe laces called zubits. They allow us to lace them in place and all he has to do is open and close the magnets to put his shoes on and off. We use the Cat & Jack adaptive brand of pants to help him not have to use buttons or zippers. A lot of clothing companies are coming up with adaptive clothing now, which is great. We have installed door handles instead of knobs on all of our doors in our house that allow Elijah to open and close doors with ease and even quiet when he needs to. We only use deadbolts on the doors so he can easily lock and unlock doors. For legos we use a lego separator that you can get at the store, this helps him be able to pull legos from each other without frustration. We buy nerf guns that have a pull system and have a quick action trigger so that he can play with ease. At school, he uses an ipad for long writing assignments and things that will fatigue his hands.

What would you like new parents of children with CHD to know?

Hi new parent. I can only imagine what you must be feeling as you look at all these pages and words. Sometimes it is enough to make your head spin. Parenting is an adventure that you pretty much have to take day by day. This too, is how you will need to take parenting your child with a CHD. Some days, you will need to be the secretary that makes all the appointments, fills out all the forms, answers all the questions with knowledge and understanding of what your child’s limitations and abilities will be. Some days you will have to educate others on things that your child needs and what is appropriate and inappropriate to say or what laws and rules are there to protect your child. Other days you will have to advocate for your child, you will need to understand the delicate balance of getting other’s attention to make sure that your child receives what is needed but also understanding when not to bulldoze or become “that parent’ that gains a negative reputation. Some days you will have to comfort your child and talk through ways to uniquely problem solve situations to best help them navigate the world or teach them how to advocate for themselves because you know one day they will have to. But most days, you will just need to be there to love on your kid. To look at them with the adoring eyes they need. To teach them how to fish or ride a bike or make them pancakes for breakfast. Most days won’t be any different from any other experience you have raising a child. You have the most amazing gift of a child and what makes them special is not their limb difference, but their heart. They will know that because you see that in them. I always say if I do my job right, when my son grows into an intelligent, advocating, well-rounded adult, no one will ever even know I did my job at all.

Child, Teen, and Adult Stories

Nitra

Nitra

My name is Nitra, I am a fun, cool, and nice, and I try my best to prove that. I enjoy playing soccer with my team.

How long have you been a patient at Shriners Hospitals for Children – Northern California?

I have been a Shriners Hospitals for Children – Northern California patient since I was 22 months old.

What is your experience of having a congenital hand difference? It’s been hard to fit in but I still try my best to be a part of my group.

What is something that makes you proud or something that you like about your congenital hand difference?

I like to fit in, but I also like to stand out a little bit.

How have you adapted to activities? I try many ways to do things and eventually figure out how to do it my own way.

What are things you did not expect in having a congenital hand difference? I did not expect that it was going to be hard just to figure out my own way to do things I enjoy. I managed this by finally figuring out how I would do things.

What would you like new parents to know? Fitting in may be hard but it’s worth your effort and time.

Arnav

Arnav

My name is Arnav and I’m just an 11 year old kid. I was born with a hand difference, but that has not stopped me from participating and having fun doing activities that other kids my age normally do. I’m going to be honest when I say some things are going to be hard, but I personally have always found a way for me to participate in activities I enjoy. My hand difference has not inhibited me in any way and I adapted to enjoy playing the piano, participating in the performing arts (theater) and playing soccer, baseball, and basketball besides going about doing my daily activities.

How long have you been a Shriners Hospitals for Children – Northern California patient?

I have been a Shriners Hospitals for Children – Northern California patient since I was born.

What is your experience of having a congenital hand difference?

Having a hand difference makes doing some common things harder, like simply opening a bottle cap for instance for me using my left hand. For most people it is just a normal routine task to do, requiring no effort at all, but kids like me with a congenital hand difference might have trouble doing such a simple task. I have adapted as I have taught myself that there are a lot of different ways to do such a task. In life, people may not be so kind when they notice your difference, some may make some rude comments, but one has to go on with one’s life in high spirits showing that nothing is unachievable if you don’t feel like talking about it. If you feel fine sharing ( as I have done ) as to how you were born with it then do so as a lot of people are understanding in nature.

What is something that makes you proud and/or something you like about having a congenital hand difference?

I’m proud to have a hand difference because I feel that I have been given a gift. My difference has made me stronger in life, especially mentally. I believe I can persevere through all hardships life throws at me, especially since I have taught myself to overcome all hardships that I have faced with my congenital hand difference.

How have you adapted to activities?

I play the piano and my left hand sometimes is not able to reach all the notes at once. I have to think beforehand what notes I need to play and where I need to place my left hand before that part of the song comes up. Occasionally, I can figure out how to position my right hand to improvise so I can help play a note with my left hand.

I also play baseball and when fielding I use my left hand as my glove hand because I am dominantly right-handed. My fingers and hand does not fit all the way in, so I have to adapt and position my fingers differently in the glove to make it more comfortable for

me and easier for me to catch a ball (though I wish gloves were easier to get customized for children with hand differences ).

What are things you did not expect in having a congenital hand difference?

I didn’t expect to be able to play baseball and play the piano. In baseball in batting, the problem was my left hand wouldn’t fit fully around the bat’s handle in supporting my right hand when gripping the bat and swinging. While fielding it also wouldn’t fit well in my glove. For batting, I had to modify my batting glove to fit my left hand snug to get a better grip on the bat while swinging (we had to cut the batting glove fingers to my finger size and have them re-stitched at the top). And for fielding I had to practice and strengthen my left hand so I could catch a ball with the fielding mitts (since we were unable to get the mits fitted to size ). Strengthening my left hand also helped me in improving my grip when holding my baseball bat.

For being able to play the piano I had to mentally plan hand placements ahead of time and improvise using my right hand to compensate and play some notes instead.

What would you like new parents of children and other children/ teens/ adults with congenital hand differences to know?

I would like these parents to know that everything is going to be ok. Your mind may be going crazy right now, but calm yourself, I promise it’ll work itself out. Your child may look different on the outside, on the inside they have as pure a heart as anyone.

Tal

Tal

Hi! I’m Tal. I grew up in the Bay Area and with Shriners Hospitals for Children – Northern California and after a brief stint on the east coast, happily came running back to foggy San Francisco. Today, I work as a Product Manager at Google. When I’m not traveling or spending time with friends, I love to dance, build things, or learn something new (most recently, I’ve been happily falling down a mountain as I try to learn to snowboard!)

What is your experience of having a congenital hand difference?

I consider having a hand difference to be a part of who I am, but by no means the entirety of who I am! While it can sometimes take some work to help other people realize this, for the most part I’ve found that if I’m just myself, people tend to figure it out pretty quickly.

What is something that makes you proud and/or something you like about having a congenital hand difference?

I love solving problems. Growing up with a hand difference meant I was always getting to figure out how to do things myself – a nice puzzle to figure out! When I was younger, I got to work with my parents and siblings to figure out how to do something myself (like how to put a bracelet on my left wrist without having a right hand). Later in life, this same love for problem solving helped me in school and work. (Plus, the 50% off on manicures is pretty great!)

How have you adapted to activities? (Share specific examples if possible)

I have various adaptations for different activities, but most of them aren’t things I even think about, they’re just naturally how I’d do something. I use prostheses for certain activities, whether it’s a myoelectric to ride a bike, a passive sports arm to exercise, dance or make it easier to get up when I fall down a mountain learning to snowboard, or my mechanical hook when I’m working in the woodshop.

What are things you did not expect in having a congenital hand difference? How did you manage these unexpected things?

There are always little things that can pop up – new activities you didn’t expect to be as challenging as they are, new situations or people to interact with – but the overall need to adapt to activities and people quickly becomes just a part of life!

What would you like new parents of children and other children/ teens/ adults with congenital hand differences to know?

Growing up, it was never a matter of if I could do something, but rather a question of figuring out how I could do it. I loved this approach and still enjoy it today.

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