Most people with Apert syndrome will need surgery – or multiple surgeries – at some stage in their lives. These surgeries can range from life-saving to cosmetic but will usually happen during childhood.
As part of my Living with Apert series, I wanted to talk more about some of the surgeries I’ve had over the years.
My earliest operations
My childhood included a lot of operations.
Between six- and twelve-months old, while still with my mother, I underwent my first surgery to separate my thumb and forefinger on my left and right hands to give me that all-important pincer grip. I think this is the most crucial hand surgery because it gave me the dexterity to be able to pick things up and develop the fine motor skills in my hands.
Later in my childhood (I think I was nine years old), I had surgeries to separate my toes and all the fingers on my left-hand but I found the surgery and recovery so traumatic that I eventually refused to have any operations on my right-hand, even though I’m right-handed.
Major surgery in adolescence
Because of the way the skull forms when you have Apert Syndrome, many people have shallow eye sockets that cause the eyes to protrude. The bones in the middle of the face can be underdeveloped too.
When I was approximately 12 or 13 years old, I had a major operation to address these issues.
My skull was cut from ear to ear and a bone graft taken from my hip was positioned to build up my forehead and cheekbones, essentially creating more depth in my eye sockets.
I remember that my jaw was wired closed for six to eight weeks and I was tube-fed a liquid diet. I needed a tracheostomy to help me breathe for the first week post-surgery. My stomach shrunk and it was hard to talk.
Following this surgery, I developed a significant squint so I had a further surgery to correct this.
Due to ongoing hearing problems and ear infections, I also had grommets fitted under general anaesthetic.
I plan to talk about my son Elijah’s experiences more in later blogs in this series. While I’m on the subject of surgeries though, it’s worth pointing out that Elijah needed different surgeries to me in his early life.
Like me, when he was six months old, he had surgery to separate his thumbs and forefingers. During his first year, he also needed surgery to correct his twisted intestines.
At eight months old, an MRI showed that Elijah would need surgery on his skull to make room for his growing brain. At 14 months, he had bone distractors fitted, which would gradually give the plates of his skull room to grow.
This goes to illustrate the point that Apert syndrome affects everyone differently. Yes, there may be common ground but there may also be a huge variation in the surgeries needed.
Life with Apert for me
To be honest, I haven’t found living with Apert Syndrome too difficult. My health is generally good, although having Apert does affect my hearing and nasal airways. I had to have T-tubes inserted into my ears to keep the middle ear aerated and stop it filling up with fluid.
People stare at me sometimes but I just stare right back. Children ask me questions and that’s OK, I’m happy to answer them. Having Apert Syndrome has never held me back but maybe that’s because I used to fighting for the things that matter to me.
Don’t forget to keep an eye out for the rest of my ‘Living with Apert syndrome’ series. Follow us on Facebook at Elijah’s Hope.