Spina Bifida Patient Publishes First Book “Crotch Height Perspective” Discussing How She Embraces Life in a Wheelchair

Growing up “Normal”

Growing up, Steph Derham always thought she was normal. She says she has her parents to thank for that. Steph is incredibly grateful that her mom and dad didn’t treat her any differently from her brother as a child.

In fact the only variation between the two of them was that Steph crawled or was carried everywhere because she wasn’t able to walk. But, in her mind, that was normal.

Then, at 8 or 9 years of age, she came across a letter titled “The Chronically Ill and Disabled Person’s Act” and she asked her brother what it meant. That’s when her brother broke the news- she was disabled. That letter was describing her.

The Diagnosis

Steph was born in 1961. Immediately after birth, the midwife told her mother there was something wrong. However, it wasn’t until her 6 week checkup that she received her diagnosis- spina bifida.

The condition occurs when the spine and spinal cord don’t form properly while the baby is in the womb. It can cause paralysis and brain damage. Steph faces total paralysis in her legs but thankfully, she suffered no brain damage.

Doctors told her she would never sit up, let alone take any steps. But despite the prognosis, Steph, now 57, is thriving.

She partly attributes her successes to the boarding school she started attending at age 11. This school was specifically centered to care for those with physical handicaps. She was sent there because her home school couldn’t accommodate her needs. But through that experience she was able to meet others who experienced similar hardships.

This school also put things in perspective for Steph. Seeing some of her classmates without limbs made her in some ways grateful for her own type of disability. She says-

“I thought that really, I wasn’t that disabled. Regardless, we all just got on with it.”

She went on to marry her husband Graham and have three kids. The two have now been married for 20 years.

Early in her life, she struggled to get a job. High unemployment rates coupled with her already limited job options (those that didn’t require her to stand all day) made the search extremely difficult. However, she ended up having a successful career as a radio dispatcher, call handler, and investigator with the Leicestershire Police. After 17 years, she just recently retired in 2018.

New Breakthroughs

In February of 2019 a huge breakthrough in spina bifida research occurred. A child with spina bifida successfully received a surgery which corrected the condition while they were still in the womb. This was the first time this had ever been done.

Spina bifida can be diagnosed at 20 weeks gestation. Many women have historically chosen abortion once they have heard the news. Steph’s own mother said she would have chosen abortion if she had been given the option while she was pregnant.

The success of this new surgery could change this statistic. Steph herself is so excited about the prospects of this surgery. She says that she is an advocate for anything that could improve the quality of life of children with the condition. She knows that if she had been able to have a surgery like this one, she would have had many more opportunities in life. For instance, she could have fulfilled her dream of being a teacher.

Despite this, she says she has lived a full life with her diagnosis. In fact, she says if she had to change something about her life it would be having every shoe fit her feet properly, not her disability. But in all honestly, she would change nothing at all.

The Book

In her retirement, thanks to the encouragement of her son, Steph decided to begin writing. Just recently, her first book has been published. It’s called Crotch Height Perspective: It’s just the way it is!’

The title reflects her view of life while living in a wheelchair.

She was inspired to begin writing this particular book after hearing about the successful surgery last February. She explains that it got her mind turning about what life would have been like for her had it been available when she was in the womb. She hopes that by her words she can help people understand what it was like to grow up with the condition in the 60s and what its like to live with the condition now.

If you would like to purchase the book, it is available on Amazon.

You can also read more about Steph’s personal journey with spina bifida here.

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