Santiago’s Story, by his mum, Louisa
Santiago arrived a month earlier than expected and, after 90mins of almost pain-free labour, he was born on the doorstep of our flat. He was caught by a neighbour who was a paediatrician! Although his birth was very easy, I had to be given general anaesthetic in order to remove the placenta, which left me dizzy, sick and grumpy for the following 24 hours. I had had a very easy pregnancy, and had felt very well and healthy.
At this time, we lived in Venezuela. All the scans were ‘normal’. Santi looked very similar to his sister at birth, he also weighed and measured exactly the same as she had. So when the hospital neonatal specialist asked me if Santiago’s father and I were related, I was very short with him and did not understand the relevance of his question. He insisted on asking twice more…
Eventually the gynaecologist told me that Santiago had Down Syndrome. I did not believe him and, in fact, only truly believed it once the genetic testing had been done and confirmed trisomy 21.At 3 months old, his paediatrician suggested he see a cardiologist, because a large number of Down Syndrome babies had congenital heart defects.
That was when we found out he had 3 holes in his heart and very serious pulmonary hypertension, and needed open heart surgery before 6 months old. It was a very complex and expensive surgery, which was eventually carried out 5 days before he turned 6 months. He weighed only 3.5kg at the time. The surgery went very well and the pulmonary hypertension was completely erased.
Santiago was very well, for a few months and began to receive physiotherapy to improve his hypotonia, and by 18 months he could walk. He was in and out of hospital until he was 8 years old. He caught every infection going, had adenoids and tonsils removed, followed by hernia repairs. This put a great strain on family life. His sister felt very left out as Santiago needed so much attention. Once, she even asked me to buy her medicines to be like Santi! But as he got older he needed less medical attention, and his sister became was less jealous and more willing to play and share with him.
When we arrived in Nottingham, after Santi being born and having lived his first 13 years in Venezuela, I was worried about how he would adapt to his new surroundings, language and climate. l should not have worried! He took it all in his stride – he loves his school, his house and even the snow! Santiago is non-verbal, but understands both Spanish and English, responding with Makaton, gestures or actions. He loves music and dancing. He adores his sister and our cat. He is happy, smiley and sociable most of the time and occasionally really mardy, like all teenagers. Life with him is complicated and exhausting but we love him and wouldn’t change a thing!