‘People were pointing and staring. My son cried, ‘This is why I hate coming out with you.’ It broke my heart.’: Widowed mom with Russell-Silver Syndrome urges kindness

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“I was born 2 weeks late. When my mom was pregnant, she knew I was going to be small because of the scans and measurements she had. I was born at Hope Hospital, Salford, in 1975. I spent a lot of time in the hospital in my younger years due to several chest infections, one of which lead to pneumonia. Also, I was in the children’s hospital a lot because they didn’t know what was wrong with me so they said the reason was ‘failure to thrive.’

A baby girl with Russell-Silver Syndrome lying on her back
Courtesy of Caroline Myers

When I was about 18 months old, we went to Great Ormond Street Hospital in London to see Professor Tanner. At the time, he was the top growth expert in the country, and as soon as he saw me, he knew I had Russell-Silver Syndrome (RSS) because of the features I was showing. After being diagnosed, we learned no one had ever heard of RSS—not doctors or other health professionals—so people were always keen to learn about it. When I was about 7 years old, I used to go to the children’s hospital for the day, and when junior doctors and consultants had practical exams, I was always the trick question. I took part in this for a couple of years.

A baby girl with Russell-Silver Syndrome sitting in a chair
Courtesy of Caroline Myers
A girl with Russell-Silver Syndrome wearing overalls
Courtesy of Caroline Myers

Russell-Silver Syndrome is a rare disorder. The main characteristics are poor growth before and after birth and low birth weight. I only weighed 3lbs 8oz when I was born. My head was large compared to the rest of my body: my mom said I looked like ET (you have always got to have humor). Feeding was difficult because I had bad reflux, hypoglycemia, curving of the pinky finger, a triangular face, a small jaw, and one side of my body was longer than the other. RSS is a genetic disorder, most cases are not inherited.

A baby with a big head due to RSS
Courtesy of Caroline Myers

The average female with RSS grows to 4 feet 7 inches; I am only 4 feet 2 inches. My height is not a problem to me, but I find it is more of an issue for everyone else.

From birth until I was about 2 years old, I spent a lot of time in the hospital. At one point, I was in for 26 weeks when I was 18 months old because I kept being sick and I was projectile vomiting a lot. My developmental stages like sitting up and walking came on at a later age than other babies; instead of crawling, I would roll along the floor to get to where I wanted to go.

A child with RSS lying on the floor
Courtesy of Caroline Myers

When I was younger, my height didn’t stand out as much, I went to nursery then onto mainstream school, so I stayed with the same friends all through my school days. At school I was never bullied; everyone wanted to protect me and be my bodyguard. My height only got noticeable as I got older.

Sometimes I struggled with the table and chairs in school, and I am a slow eater, so it took me longer to eat my lunch. People would say to my mom, ‘Aww, how old is she?’ ‘My child is younger and bigger than her.’ It sometimes made my mom feel like my size was some sort of competition. When I spoke, people were shocked because they thought I was younger than I looked. I’ve never had a problem with talking and still don’t now. My motto has always been if you can’t be seen, make sure you’re heard.

A girl with RSS wearing pigtails and overalls
Courtesy of Caroline Myers

People can be very patronizing and would quite often pat me on the head and say, ‘Isn’t she cute?’ If anyone wanted to ask a question they would ask my mom instead of me, and she would reply by saying, ‘Ask Caroline, she is capable of answering for herself.’ We have never met anyone else with RSS, but I think nowadays there are more support groups and awareness for people with RSS especially now with social media.

I have one brother, he is 18 months older than me he has not got RSS. My mom has always been my rock from the minute I was born. She has always been there for me, she has never treated me any different, she has made me become the strong and independent person I am today. From an early age, she has never made any allowances for my size. She taught me to fight my own battles and not put up with rude people. It has helped that I have always lived in the same area and gone to school near where I live.

A girl with a rare growth disorder wearing a red dress
Courtesy of Caroline Myers

By sharing my story, I’m hoping that people will have a better understanding of RSS because every day in my life I have to put up with people pointing, staring, and making comments about my height. Most days, I can just ignore them, but I am human and I have feelings, so, yes, I do get hurt by them. I’m not hurting them, so why do they think it is okay to do that to me? I don’t have a problem with confronting them, but if I confronted people every time, I wouldn’t be able to get on with my life. On some occasions, I have been out and people have tried to film me or take a photo of me, which I find so rude and I think is invading my privacy. If people took the time to ask me about my size, I wouldn’t have a problem educating them about RSS. When these people are being so rude, in my head I’m always thinking how sad they are because they will never have someone like me in their life.

A woman with RSS stands in her living room
Courtesy of Caroline Myers

Recently, I was out with my 14-year-old son, and people were pointing and staring. We had only been out for 10 minutes, and he said, ‘This is why I hate coming out with you.’ It broke my heart. Not what he said but that these people were making my son feel this way, especially in this present time when we are trying to ‘be kind’ and work on people’s mental health, everyone needs to be aware that what they say and do is potentially damaging. A couple of years ago, my son and I were out shopping, and he just stopped in the middle of the place and cried his eyes out saying, ‘I’m sick of everyone doing this to my mom! They are hurting my mom, and they wouldn’t like if I hurt their moms! Why do they think it’s okay to do this?’

I have experienced this on nights out, where I have had to stop my friends from confronting these rude people. You can’t let them win, and I won’t do that. They are not worth spoiling the time you are spending having fun and making memories. I am a very positive person, and this helps me to carry on with my life. No one is going to stop me from following my dreams. I’m worth so much more than small-minded people. I’m lucky to have amazing family and friends who support me and also help me. Without them always being there by my side, I wouldn’t be where I am today.

A woman with RSS dressed up for a night out
Courtesy of Caroline Myers
A widowed mom with a rare growth condition wearing a mustard shirt
Courtesy of Caroline Myers

When I was younger there was no medical support, it was just learning to cope with it in my own way. One time, I remember going to see a doctor and he said, ‘Don’t worry if you don’t get a job when you are older, you could always work in the circus.’ These are the kind of things that made me want to prove to people I can achieve whatever I want. My mom was told I would probably never walk or talk, but I proved them wrong. It might have taken me longer, but I did it. Something I don’t say a lot about myself is how proud I am for never giving up; I have challenges every day, but I always find a way around them.

When I was 8 years old, I had a road traffic accident, where I was traveling in a black cab and he slammed on his brakes. I catapulted off the seat, and I ended up with a slipped upper femoral epiphysis. This meant I was in plaster from my waist to my ankle on one leg and to the knee on the other. I was in the hospital for 2 months, and since my accident, I have had less movement in my left hip. I had a hip replacement in 2017.

After finishing school, I went to college then I got a job working for a courier company, and it was there that I met my soulmate. We got talking over the radio (showing my age, before mobiles). He asked me out on a date, and the rest was history. My height was never an issue to Dave: he loved me for being me. It was a challenge at first when we went out because again, people were being rude. He wanted to confront them and protect me.

I also got the honor of becoming his wife. My wedding day was one of the happiest days of my life, I did make some changes to make it easier for me. I chose somewhere with no steps. I didn’t want bridesmaids because I needed to be the center of attention that day, and no one would have been able to see me. I had a lovely wedding dress that was made to fit, and it was beautiful. The day was spent with everyone who didn’t judge me or make rude comments. After 12 months of marriage, we found out we were going to be parents, something we had planned.

A woman with RSS on her wedding day
Courtesy of Caroline Myers

I knew from early on in my pregnancy I would have an elective C-section. I was monitored a lot more than others. I was never worried about if my child would have RSS because I knew with my knowledge and experience I would be to help and support my child if they did have it. My C-section was booked for the 26th of September which made me about 36 weeks, but my water broke on the 30th of August, and I ended up having an emergency section. Finlay was born 7 weeks 5 days early and weighed 3 pounds 13 oz. The consultant said the reason I needed to have a C-section had more to do with the limited movement in my hip, not my size.

Finlay and I stayed in the hospital for 4 weeks. There were some issues being small after having section: the bed was too high for me to get on even after it had been lowered, so I had to push myself on using a chair, also when I went to see Finlay in SCBU, I couldn’t reach the buzzer for them to let me in. Dave worked away, so I relied on my mom a lot for support: she lives around the corner from me, so she would help me to bathe Finlay and put him to bed when Dave was working away. I couldn’t take Finlay out on my own when he got older because I struggled to pick him up and carry him, so again I relied on family and friends. I had to have 2 of everything, so upstairs I had a Moses basket, changing mat, diapers, etc. so I didn’t have to carry things up and down the stairs. When I was pregnant, I finished work so I could be at home with Finlay. Physically, it would have been too much to work and look after Finlay with my disabilities.

In February 2010, I lost the love of my life. Dave died from a valve missing in his heart that no one knew about, it happened very suddenly. Finlay was only 2 1/2 years old. This was such a shock especially to become a widow at 35 years old with a young child. Again, I had and still get a lot of support from my mom, and I’m very lucky to have great friends. We have been friends for over 40 years.

A woman with RSS stands next to a Christmas tree
Courtesy of Caroline Myers

As Finlay has gotten older, he has become a young carer, and that is something he still is today. He helps me with shopping, cooking, and lifting heavy things. He is amazing. and I’m so proud of him. When people are being rude, sometimes I just want to say to them, ‘You being rude doesn’t hurt me. I will tell you what hurt me: being told my husband had died.’

RSS is going to be with me forever, so I focus on what I want to achieve in the future and on making sure Finlay is okay and happy. My dream would be to write a more detailed story of my life in a book. Finlay wants to add about him being a young carer to make sure people know not to let others decide your future, only you can control that. Finlay has had to grow up sooner than he should. We are also limited in what things we can do together, but we do try our best. I also hope that he gets to do what he wants to do in the future: he deserves to get out of life what he has planned, he works so hard at school and helps me so much at home. I’m so proud of him, after everything he’s been through.

A woman with RSS smiling at a table
Courtesy of Caroline Myers

As long as we are both happy and working towards our goals in life, that’s all that matters. I hope after reading my story just one person stops and takes on board what impact their actions can have on someone’s mental health. Then, I would be happy knowing that sharing my story has been worth it. Carry on being kind to each other. I hope this will also encourage more awareness about RSS: if new parents can see that you can go on to have a happy fulfilled life with RSS, then I’ll be glad. Don’t let RSS hold you back, follow your dreams.”

A woman with RSS wearing a fancy dress by a couch and a Christmas tree
Courtesy of Caroline Myers

This story was submitted to Love What Matters by Caroline Myers. You can follow her journey on Instagram. Submit your own story here, and be sure to subscribeto our free email newsletter for our best stories and YouTube for our best videos.

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