Nadia Pastore

Nadia received an enormous amount of attention the day she arrived. Over the next three days doctors came and doctors went. They looked at her palms, her ears, her feet and her muscle tone. I initially thought the attention was due to the difficult delivery I had had. Eventually I plucked up the courage and asked a midwife about the attention my daughter was being given. I was told that Nadia's eyes had a distinct appearance about them, and appearance that was normally associated with chromosomal abnormalities.

Finally a professor from the neo-natal unit came to speak to us. He explained, with great honesty and clarity that the attention Nadia had been receiving was due to concerns from the medical staff, of the possibility that she had Down's Syndrome. He too examined her - checking, again, her palms, her ears, her feet and her tone, but in his opinion, however, she displayed none of the classic traits normally associated with the condition. She was alert and responded well, and more importantly, displayed no 'floppiness'. He would perform a blood test - just to confirm his opinion.

We had to wait five agonising days for the results, due to the test having been performed prior to the weekend. For hours I would stare at my little girl - she looked so 'normal'! I was convinced they had got it wrong.

Two and a half years previously I had given birth to twins, Emilio and Milena. Sadly we lost our daughter within hours of her birth due to kidney complications. I need not explain to any parent how difficult that was to accept and move forward from - truly a life-changing experience. The decision to have another child was immensely difficult and the months during the pregnancy were plagued with bouts of fear. We had made the decision, after talking with my consultant, not to have any routine blood tests throughout the pregnancy - it was thought that any further stress would be detrimental to both my unborn child and me. There was never any question about termination - it would never have happened … and surely, 'we couldn't be that unlucky'. I so desperately wanted a girl.

Nadia was readmitted to the hospital the weekend after she was born with severe jaundice. It was during the period that we received the call from the professor with the results of the blood test. The wait was over - Nadia had tested negative for Down's Syndrome. She was 'normal'. I remember crying and not being able to stop. The roller-coaster of emotions that we had endured over the last five days had finally come to an end.

The following Wednesday, Nadia was well enough to return home. We were finally going to be able to settle down and enjoy our new family member. That Saturday we planned to go out. We had promised our son, Emilio, a treat for having been such a good boy over the last week. He was so excited as we dressed his new sister and prepared her pram. Outside the sun was shining and my husband, Nando, was fitting the new car seat, when the telephone rang.

After what sounded like a brief a conversation, Nando, came into the front room and said that we would have to delay our outing. 'That was the professor. He's coming round to see us. He'll be here in 10 minutes'.

Memories of the following hours are a little blurred and fragmented. As Emilio 'played up' wanting desperately to go out, there sat the professor in our home telling us that further tests had been performed with Nadia's blood during her recent stay in hospital. This had come back with a positive diagnosis. Nadia, he told us, was a child with a condition known as Mosaic Down's Syndrome.

'What? - I wasn't aware that you could be 'partly' Down's!
How?
Why?
What does it mean?
What is going to happen?'
It was all just too much to take in.

After the professor left, my husband and I just sat there, unable to communicate, unable to look at one another, lost in our own worlds. My emotions were all over the place - one moment crying, the next moment feeling extreme anger, with lots of self-pity thrown in for good measure!

'What had we done to deserve this?
Had we not been through enough already?
What would people say?
Was there something wrong with us? …. With me?'

The following days were so difficult for the both of us. My moods were reactive as opposed to pro-active, they were often irrational and the future looked bleak. Who was going to look after Nadia when I was gone?

Our immediate families were fabulous and their support unwavering. However, my husband and I decided that other than family, we wouldn't tell anyone else about Nadia's diagnosis, at this point. We so wanted her to be given a chance, and for people to accept her without judgement. It was the right choice for us at that time - we needed the opportunity to come to terms with the news, to clear our heads and to start the healing process. What we couldn't cope with was others' grief or sympathy at that point.

As time has gone on, that has changed and we have told our friends. Some say they knew something wasn't right and that Nadia had 'a look about her'. Others have found it unbelievable, having noticed nothing. But that isn't important any longer … those initial worries about how she looked and how others would view her; whether she and I would be able to share those 'girly' things such as shopping days like I'd enjoyed with my mum - that special daughter 'thing'; guilt that I had felt at having been so negative, so ignorant, and doing just what I didn't want others to do - judge her. These are all things of the past now!

Emilio, mum and Nadia (3 weeks old)	Nadia's 1st Christmas (6 months old)

At 17mths, Nadia is the most precious gift we could have ever received. She is beautiful, charismatic and the most joyful little girl I have ever known. She's very placid and extremely easy to care for, always laughing, very loving and overtly affectionate - who could ask for anything more?

As she has grown, so have we as a family. As parents we are so proud of Nadia, and love her unconditionally. Her big brother, Emilio, is wonderful with her - he loves to show her off at nursery, and his affection, support and protection for her is unwavering.

Nadia and Emilio (her 1st birthday)	Nadia playing in the garden (16 months old)

The healing process is very different for all of us. But we are coming through it. There is light at the end of our tunnel. And that light is so very bright!

Diane Pastore