I was born in the 1960s and there had been no indication that I would be anything other than a healthy baby. However, healthy I was not.
On my first attempt at feeding, I turned blue and needed resuscitation to start breathing again.
I was transferred to a hospital 40 miles away for urgent surgery to repair a tracheoesophageal fistula and oesophageal atresia.
Meanwhile, my mother remained in the maternity hospital recovering from labour.
Early Findings
Further examinations revealed several anomalies:

• I had five fingers on each hand but no thumbs.

• The bones in my right forearm were curved and there was a fusion with my wrist bone.

• My right foot was clubbed, all but my big toe was curled into the sole of my foot.

Orthopaedic surgeries commenced when I was aged 3.
With the last surgery completed in time for me to join school.

• My radius was pinned, and my right wrist was immobilised.

• Although my forearm eventually straightened, I was left unable to bend my wrist.

• My foot treatment was successful, and my previously curved toes were straightened.

At that time, there was no mention of VACTERL/VATER association; the pattern was not recognised until after 1974.
In fact one entry in my clinical notes refers to me as having Marfan’s syndrome.
A Diagnosis later removed and replaced with VACTERL Association.

Cardiac (At least I have one)
On accessing my medical notes I found the reference to
Marfan’s Syndrome.
My GP at the time couldn’t believe I had not been through genetic screening.
I was referred to Cardiology screening, that showed I have
mild-moderate Mitral and Aortic Valve regurgitation.
A shortened Aortic root and fused Tri-cuspid valve.

Spinal and Neck Findings
In the late 1990s, doctors identified several spinal issues:

• A butterfly vertebra at L1–T12

• A fused sacrum

• Scoliosis bending to the right.

Years later, investigations into neck pain revealed an unusual C1 vertebra and a greatly reduced clivus.
Also, fused C2/C3/C4.
This was after many years of being told I just had a “stiff neck”.

Just back pain or is it Renal?
I had several admissions into hospital with Kidney Infections.
However, the treatment was given but no extensive diagnostic screening.
After talking with a fellow VACTERL Adult I was urged to get a Kidney screen. This test showed that I have a left kidney that is reduced in size compared to my right sided kidney.
This diagnosis only happened because I felt empowered to push for some sort of screening (Thanks Kate)

Taking Charge of My Health
Seeking clarity, I arranged my own CT and MRI scans of my spine.
Over time, my health deteriorated, and I retired early in 2022.
I eventually discovered patient groups such as TOFS UK and the VACTERL Association Adults and Teens UK, where I learned that my medical history aligned with VACTERL features.
 
Community, Support, and Purpose
Thanks to organisations like TOFS UK and the VACTERL Association Support Group UK, I have met many others who share a “VACTERL life”. Their friendship, care, and understanding have made daily struggles much lighter.
I am privileged to work alongside fellow visionaries who aim to support others who may feel isolated, overwhelmed, or alone with their VACTERL anomalies.

We are experts by experience.
Don’t live it alone.
Find the support you need through the resources we have created.
Join our community of people living with VACTERL Association.