About Me



Having already had a baby, I was looking forward to the birth of our second child. The pregnancy went well without any complications and Aymie arrived weighing a healthy 8lb 6oz on September 6th, 1991.

After almost 6 hrs of labour, I was feeling exhausted, but happy that everything had gone well, until the nurses started recounting the fingers and toes for the third time.

Alarm bells started ringing in my head. I knew that something was wrong. Aymie had arrived with an extra finger on her left hand (this is not connected to the syndrome itself). More strikingly though, was Aymie’s facial features.

Aymie was a very pretty baby, but her features were more noticeable. I knew that I had not seen a child with the same features before and that worried me. Aymie had some breathing difficulties and was taken away to be suctioned and given oxygen, but after a short time was brought back to me to hold.

Over the following months, Aymie had more breathing problems, chest infections and ear infections, resulting in me pestering the doctors at the postnatal checkups and the local hospital.

Aymie was hospitalized several times. Since being born, Aymie has developed kidney problems resulting in re-siting of the left ureter, her left kidney being removed, and finally, shortening of the right ureter, re-construction of her bladder using part of her bowel and the use of a catheter into her bladder.

Aymie’s bladder was mis-shapen and had high pressure, which meant that she was not emptying her bladder completely, one of the causes for all the urine infections she also suffered from.


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