Phato’s story

Newborn baby with bilateral clubfeet - missing fingers and toes caused by amniotic band syndrome

During my pregnancy, I started to see a Gynaecologist when I was two months pregnant. Everything was fine. I was five months pregnant when my Gynaecologist told me that there was something unclear on a scan. I never thought there was anything to worry about but he referred me to another Gynaecologist. I went there and that was when I was told that my baby had Clubfeet.  The Gynaecologist said, “a rare Clubfeet, I’ve never seen this type of a Clubfeet before”.

All sorts of things and questions came into my mind, “my baby is not gonna be able to walk”, I thought. The Gynaecologist also told me about something has wrapped around some parts of the baby, “it seems like an umbilical cord, I can’t see all his fingers and toes and his right leg seems bigger than the left leg. It’s very swollen and spiral” and she was shaking her head, looking very serious and puzzled. I couldn’t help myself but cried.

She immediately referred me to Tygerberg Hospital to see the panel of Specialists there. “Is my baby going to have a Down Syndrome?” I asked myself. In Tygerberg it was then confirmed that my Phato had Clubfeet and Amniotic Band Syndrome. I was told that he had 3 fingers joint together on his left hand. He had only two toes on his left foot. His right leg was wrapped with a band right at the bottom of his knee. I got so relieved by the explanation they gave me there.

I gave birth on the 16th January 2014. The bands were treated right away after birth and he started his first cast on his 12th day after he was born. It was not easy at all for me seeing my tiny baby on a cast. On the 7th April when he was 3 months old his first operation was done on the leg, that was the worst day of my life. Plaster casts were then stopped and started again after his operation got healed.

On 19 May he went through his second operation and put on his last cast covered with fibre glass. On the 10th of June he received his first pair of Ponsetti Boots and had to wear them day and night for three months. He is now wearing them during his nap time and over the night. His 3rd operation was done on the 11th of November. He is now 11 months old and going to celebrate his 1st year birthday on the 16th January 2015.

3 thoughts on “Phato’s story

  1. Aaawwwwww congratulations, he is beautiful! My daughter Carlee will be 12 on January 16! I understand about having a child with a disability, Carlee has Cerebral Palsy. Good luck to you!

    1. On his first year, January 2015 he was unfortunately diagnosed with Hydrocephalus but he is still a happy child.

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