I have HOS and so does my Son
I was born with HOS in 1987 - however my hand and heart defects were thought to be 2 separate issues. I had multiple holes in my heart and had open heart surgery at 6months old. I was unwell as a baby, but got better with age. My operation was a success and have only had the one heart operation so far.
When I was 6 yrs old, I had my left hand operated on. The doctors removed my tiny useless thumb and relocated my index finger to become my new thumb. I was born with 5 digits on each hand, now have 4 on left hand which is fine. I have full length arms, smallish shoulders but not sooo bad. I can't turn my arms/wrists properly but have adapted to my abilities.
I was 14 years old when my Cardiologist made the diagnosis of HOS.
I had my first child in 2015 and he has confirmed HOS. He was born with 3 small holes in his VSD which had all fully closed by 18months old. He has very minimal upper limb defects. I think as he grows older we will notice smallish shoulders but otherwise he is awesome. I am so grateful for my miracle child.
I am also currently pregnant with our 2nd child and will have the CVS test in 3 weeks time to see if this babe has HOS. I pray to god every day that this baby didn't get my HOS gene.
I would love to hear from any other mums who have HOS and have had or want to have kids.
Kayla xx
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