Hi My name is Alex and I was born in 1986.

It was already known that I would be born with oesophageal and spinal and limb defect but when I was born they also found a heart defect.
This led me to being diagnosed as having VATER Association, as it was known at the
time, since renamed VACTERL Association.

The issues I was born with are as follows:
Vertebrae/skeletal defects:
Fused bones at the top and bottom of my spine and a slight vertebral curve.
My breast bone is also fused into my ribcage.

Cardiac defect:
Ventricular Septic Defect (hole in lower chambers of my heart). Corrected at age 3. This has left me with a slight murmur but overall no long term issues.

Tracheo-oespohageal Fistula:
My food pipe connected to my windpipe.
This issue has been the most difficult for me medically.
It was originally corrected after birth however my oesophagus would close up regularly meaning most of my childhood was spent in and out of hospital having the fused section removed and repaired.
I also had regular ‘stretches’ where a tube was pushed down to stretch it open in
between the repair surgeries.
During this time I was unable to eat solid foods, meaning I was fed through a
gastrostomy into my stomach or had to have blended food/liquids.
I mostly ate instant mash and gravy.

At the age of 14 my surgeon retired and I was assigned a new doctor who looked for the cause of the issue rather that correcting the effects.
He found that I had a double hernia which was causing acid reflux which was burning my oesophagus and resulting in the extreme narrowing/closure.
My surgeon spent over 9 hours removing all the scar tissue from all my previous
surgeries and then corrected the hernia and performed a Nissen Fundoplication.
This means he wrapped the top of my stomach around the base of my oesophagus to create a muscle so that food could move down into my stomach but acid could not travel upwards into my oesophagus.
Since this surgery I have had no eating issues and not needed further surgeries.

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Limb Differences:
On my right side I am missing radial bone (Radial Aplasia).
My right arm is shorter than my left and my hand bends inwards.
I have 4 ‘pinky’ fingers and no thumb.
When I was a toddler I was given a brace to help hold the hand out slightly rather than
being bent into my arm.
The option of surgery to straighten it was given to my parents but they declined as they
did not feel that it was their decision as there was a risk to movement and strength.
The surgeons also explored whether this option was right for me but found as my

elbow does not bend much it would limit what I could do.
I am very determined and rarely let this get in my way however I was repeatedly bullied
through schools and college. This does affect my self esteem and I’m not the most
confident person.

Hearing Impairment:
I was born with a partially developed right ear, which means I’m mostly deaf on that
side.

Despite all these issues I am now living mostly a medical free life. I have a degree in fine art and work full time.
As an adult, I have developed a deeper understanding of the long-term psychological
impact these differences can have. Many of us carry elements of medical trauma, which
can impact both education, because of time away from school, and social experiences, as feeling different from peers can be isolating.
I really enjoy connecting with others who understand these issues and share what
knowledge I can to also help them.