East Yorkshire, United Kingdom
We live in Yorkshire, in the North of England. Our daughter, Alexandra, was born last summer and was diagnosed with a heart murmur at five weeks old. She was referred to a pediatrician but it took some weeks for us to get a consultation. In the meantime, she failed to gain weight as she should, although she never actually lost any weight, and her doctors were very reassuring telling us that the large majority of heart murmurs were innocent and Alex's did not give grave cause for concern.
It was a surprise to everybody when, at 3 months of age, she was diagnosed with complete AVSD and, on the basis of this, it was decided to test Alex for Down's Syndrome. A few days later we received the MDS diagnosis. It was such a shock, so hard to believe. She was, and still is, such a beautiful baby. Our world was turned completely upside down but we tried to remain positive. It was so difficult to tell all our family and friends who had known her for so long and couldn't believe it, having seen her.
Alex had been in hospital whilst these diagnoses were being made and, whilst there, she contracted a respiratory infection which caused heart failure, so she had to be ventilated in Intensive Care. She had to be transferred to another hospital away from our home city where she underwent two operations on her heart and made a good recovery.
She was in the hospital for a total of two months, over Christmas and New Year, and it is very difficult to put into words what we went through during that time. But she is now back home with us, her Mum and Dad and her two year-old brother, Henry, who loves her very much and is so kind and gentle with her. She is gaining weight and getting so much more responsive, it's lovely to watch.
I only just feel as though I have got back in control of my life and that things have settled into some sort of normality, whatever that is with two young children!! We have received so much love, help and support from friends and family, which we have needed greatly. We have also been getting all sorts of medical help. Alex has been referred to a speech therapist to help with her feeding, to a physiotherapist and for Portage.
We are looking forward to the challenges that Alex will present us over the coming years and I am sure that, just like any child, she will give us our fair share of frustration, anxiety, joy and happiness.
Alex had been in hospital whilst these diagnoses were being made and, whilst there, she contracted a respiratory infection which caused heart failure, so she had to be ventilated in Intensive Care. She had to be transferred to another hospital away from our home city where she underwent two operations on her heart and made a good recovery.
She was in the hospital for a total of two months, over Christmas and New Year, and it is very difficult to put into words what we went through during that time. But she is now back home with us, her Mum and Dad and her two year-old brother, Henry, who loves her very much and is so kind and gentle with her. She is gaining weight and getting so much more responsive, it's lovely to watch.
I only just feel as though I have got back in control of my life and that things have settled into some sort of normality, whatever that is with two young children!! We have received so much love, help and support from friends and family, which we have needed greatly. We have also been getting all sorts of medical help. Alex has been referred to a speech therapist to help with her feeding, to a physiotherapist and for Portage.
We are looking forward to the challenges that Alex will present us over the coming years and I am sure that, just like any child, she will give us our fair share of frustration, anxiety, joy and happiness.
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