Teen who had controversial surgery to grow 13 inches reveals what she looks like now

Chandler Crews knew she didn’t want to live her entire adult life less than four feet tall. 

The 31-year-old from Maryland was born with achondroplasia, a genetic condition that most commonly results in short stature and is characterized by short limbs, a normal-sized trunk, an enlarged head, and a prominent forehead.

It stems from a mutation in the FGFR3 gene, which leads to slowed bone development, particularly in the long bones of the arms and legs.

Though it’s the most common form of dwarfism, there are fewer than 50,000 people with achondroplasia in the US. The condition is generally diagnosed shortly after birth, as in Crews’s case, but for some people, it may not be diagnosed until later in childhood, when a child’s growth is not as expected for their age.

Both her parents and two siblings are of average height, and like around 80 percent of children with achondroplasia, Crews inherited the condition due to a mutation in the FGFR3 gene that occurred at the time of conception. 

Growing up with achondroplasia was extremely difficult, Crews says, and she remembers her mother constantly fearing for her life as the condition can cause sudden death syndrome due to brainstem compression and dangerous breathing problems like sleep apnea.

Her childhood was marred by frequent trips to hospitals for treatments and to meet with various specialists as dwarfism can cause complications, including bowed legs, spinal curvature, ear infections and hearing loss.

Crews also remembers feeling like a ‘show dog’ because of her small stature, and people would frequently come up to her to pat her head and give her ‘fake’ compliments to make her feel better, which she said left her feeling confused and angry. 

It was when she turned 16 and realized she would never grow any taller that Crews decided to undergo ‘taboo’ limb lengthening surgery. 

Limb lengthening is controversial in the dwarfism community because it’s a painful, expensive, and risky procedure with a high complication rate, and some believe it promotes the idea that short stature is a defect to be ‘fixed’. 

Writing on her website, Crews said: ‘I felt like I was never in my own body. I felt like my energy was wasting time in the body it wasn’t meant to be in. 

‘I didn’t want to wait for the world to change to fit my needs; I wanted to take charge and change for myself and no one else. 

‘I’ve noticed within the dwarfism community, some may feel that when someone else with dwarfism changes or alters their own body, that it’s an insult to everyone with that ‘body type.’ But it’s not. 

‘Just like everyone else in the world, our bodies are our own, and no one, even if you have the same diagnosis as them, should have any say in what you do or don’t do.’

In August 2010, when she was 16 years old, Crews underwent her first of three limb-lengthening procedures.

Leg lengthening for dwarfism or bow legs involves surgically cutting the thigh or shin bone and implanting a device (either an external fixator or internal rod) to slowly pull the bone segments apart over several weeks to months.

The bones are extended by around 1 millimeter per day, and during the ‘distraction phase,’ new bone forms in the gap.

After the desired length is reached, the device is removed, and the new bone is left to fuse back together before the individual can regain full mobility.

There are no precise, readily available national figures on the total number of limb lengthening surgeries performed annually in the US, but the procedure is performed for both dwarfism-related and cosmetic reasons, with cosmetic height-lengthening procedures increasing in popularity. 

Limb lengthening surgery in the US can be extremely expensive, and Crews estimates her procedures cost close to $2million. 

However, as she was told the surgeries were necessary to correct her bowed legs and improve her spine health, she was able to have them mostly paid for by insurance.

Bow legs, also known as genu varum, is a condition where the knees curve outward, causing a gap between them when the feet are together. Left untreated, the long-term consequences of bowed legs in adults can include chronic joint pain, progressive arthritis, instability, and restricted mobility.

Crews described the limb lengthening procedure as ‘months of twists and turns’ with a ‘little blood, sweat, and tears.’

The initial post-surgery recovery from her first surgery consisted of two to three hours of personal training sessions five days a week and daily exercises and stretches, which she did in her own time. 

By the time Crews’ bones were in the right position for the fixators to be removed from her first leg lengthening surgery, it was April 2011.

She recalled: ‘After removal, I had one month of no weight-bearing. 

‘Once I was cleared to fully weight-bear, I did have to re-learn how to walk, so to speak. 

‘I used a walker for about two weeks, then two quad canes for about a week, then down to one. By June, I was walking unassisted.’

After starting the process to get her legs lengthened, Crews also went about getting her arms lengthened so they would be in proportion with the rest of her body. 

She says people with dwarfism who opt to do leg lengthening usually opt to get their arms done too. 

Getting this procedure done, Crews points out, is important for a range of activities, from being able to drive a car to reaching into the refrigerator comfortably.  

For her arm lengthening, Crews had fixators implanted in January 2012 when she was 17 years old and then removed the following August. 

She said of the procedure: ‘This time, I only had fixators on my humerus [the bone of the upper arm], which meant I was mobile [able to walk].

‘Because you don’t bear weight in your arms, the consolidation or fusing phase can be slower as weight-bearing tends to help bone consolidation. 

‘As for the physical therapy, I did personal training two to three times a week. After removing my fixators, I had about a month of no heavy lifting, pushing, or pulling.’

The arm lengthening procedure saw Crews gain four inches in her arms. 

Crews went in for a second and then third leg lengthening in May 2013 when she was 19 years old.

Now, standing at just over 4’11″, the Marylander has been thrilled by the results of her operations. The average height for a woman varies globally, but in the US, it is 5’3.5″.

She says: ‘In full transparency, I also wanted to be more able-bodied. It was not just about being taller but also more proportionate.

‘When it came to height (lengthening legs), I didn’t want to rely on stepstools and other forms of assistance constantly. Yes, it was my ‘norm,’ but it never felt like independence.

‘Having longer arms, I can now reach the top of my head (wash it easier, high ponytails, safely use hairstyling tools, etc.), sit a safer distance away from the steering wheel when driving, not have to alter sleeves, deal with feminine hygiene – changing tampons, wiping front-to-back, not needing to use a bidet.

‘At 4’11’ I’m still really short, but I’m what I call (for myself) a “comfortable short.”‘

In a bid to offer hope to other people coping with achondroplasia and similar conditions, Crews has set up a patient advocacy group called The Chandler Project (TCP). 

The organization aims to help drive awareness for new research and advancements surrounding pharmaceutical and surgical treatments and offer vital support resources to individuals and their families. 

Now happy with her help and living independently with less pain, Crews concludes: ‘Everyone wants to feel normal, and that’s how I feel now. 

‘I’m honestly so tired of trying to make sure I don’t say ‘normal’ (because the word ‘normal’ is so frowned upon in the dwarfism community). 

‘I’m not a little person, and inside I never felt like I was. I’ve never been a dwarf either. I’m just Chandler and I have achondroplasia. It’s a life-long medical diagnosis I will always deal with and fear of passing on to my future children. Babies have died from complications of achondroplasia. 

‘Children have died from complications of achondroplasia. Adults have died from having achondroplasia. No one ever wants to talk about it, but it’s true. Living with achondroplasia is a difficult life, but it’s the only one I have. 

‘I’m working hard to make it my best life and show others they too can control the way they live with this condition.’