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When we discovered I was pregnant, 9 months after the birth of our first son, we were surprised but delighted. We had always wanted at least two children, and for them to be close in age, and Freddie had taken nearly a year to conceive, so the fact that this baby had just ‘happened’ was a huge relief. 

All was progressing well with my pregnancy up to the 20 week scan, and I had started to feel the baby move much earlier than before. I do remember feeling like my bump was different though. It had been really hard all the way through my first pregnancy, and this time it felt much softer-something I am now certain had to do with the excess fluid in my womb.

At the 20 week scan, everything seemed fine, and we were told that we expecting another boy. The scanner had just about finished taking all his measurements when he started looking more serious, and double checking the size of the baby’s head. He told us that one part of the brain was measuring 1mm too large, and it was probably nothing but we should have another scan the next day ‘just to check’. 1mm sounded like almost nothing, and I couldn’t believe that such a tiny measurement was any cause for concern, but nevertheless, just the thought that something might be wrong with our baby was enough to send me into complete panic mode. I remember how horrible it was having to tell our parents and close friends, all of whom knew we were having our scan that day, that hopefully everything was ok, but actually, it might not be.

The next day, despite our best intentions to stay positive and hope for the best, the second scan confirmed that part of our baby’s brain was measuring too large. We were given some leaflets on Down's, Patau’s and Edwards’ syndromes and booked into a more detailed scan the following week. That was the first time we heard the phrase ‘incompatible with life’. When we got back to the car, my husband broke down for the first time since the scan the day before, and my heart felt like it was breaking too.

After an agonisingly long wait, the day of the more detailed scan arrived. Once again, we tried to reassure ourselves; after all, 1 mm is a tiny amount. We almost convinced ourselves that in half an hour we would be leaving the hospital, overjoyed and relieved. Of course, that did not happen. The more detailed scan revealed several more ‘anomalies’ with our baby, who we had decided to name Rupert, or Rupey. His brain was indeed too large but the rest of him was too small, his legs were a funny shape, he was moving strangely, his hands were in an odd position, and there was far too much fluid surrounding him. The doctor told us that he suspected Edwards', and performed an amniocentesis there and then, telling us the results might take up to a week to arrive.

We had discussed what we would do if Rupey had Down’s, but I hadn’t even been able to entertain the notion that he might have Edwards'. We had been told at the previous scan that it was incredibly rare, and that we ought not to worry about it as it was so unlikely to be that. The news that it actually probably was, was physically painful. I remember going to visit a friend and her newborn baby, and just collapsing on her kitchen floor, holding my strange, soft bump in my hands and sobbing uncontrollably.

That week was the longest, and one of the hardest of my life. I was signed off from work and tried to stay busy. There are photos of me with Freddie, smiling and feeding the ducks, and now looking back, I can’t believe that I was even able to function, but you do. I remember I started to dress differently, wearing loose clothes and hiding my bump away. I couldn’t bear the idea of someone asking me when it was due, and I felt like I was carrying a ticking time bomb in my stomach.

By the time the results of the amniocentesis came back, confirming that Rupey had full Edwards' syndrome, I think we already knew what they would be. The doctor rang Simon, and he rang me. I was with Freddie and my parents in law at a garden centre at the time, and I remember driving home to Simon in silence. There was nothing to say.

During that long, awful week, we had decided that if Rupey did have Edwards', we would terminate the pregnancy, for all our sakes, but most of all for his. We didn’t want him to enter a world full of pain and hospitals, only to die soon afterwards, and we thought that going gently to sleep in my tummy would be less traumatic for him. I know that was the right decision, but it still haunts me even now. Just writing it down is incredibly hard.

The day after the results came back, we returned to the hospital. They found Rupey on the scanner and there he was, wriggling around, not knowing that in a few moments he would be still. They turned the screen away from me but I made them turn it back as I didn’t want him to be lonely, or go through it by himself. In a strange way, watching it happen made me feel like I was holding his hand and going through it with him.

Everything was silent as we watched Rupey’s movements get slower and slower, until they stopped altogether. The doctor pulled the needle out, and I rolled to the side and screamed, and screamed. Simon later said that he had never heard a sound like that.

2 days later, on Friday 21st March 2014, we went to Worcester Royal Hospital and at 6pm Rupey was painlessly, quietly born. That night turned out be incredibly special, and happy in a strange and unexpected way. Rupey was tiny and beautiful, and it really felt like he was there with us that night. We were amazed at the peace we felt-we had thought it would be unbearably sad, but that night, we held him, and loved him, and got to know our newborn son. In that night we were like any other new parents.

The midwives at the hospital were amazing. Their positivity and kindness touched us profoundly, and the dignity with which they treated our son still makes me cry at the memory. When he had been weighed and photographed, and had had lots of cuddles, Rupey was wrapped up warm in a blanket and ‘went to sleep’ for the night in a tiny Moses basket, as the normal newborn cots looked far too big for him. I slept besides him, and we all slept well.
The next day, my father visited the hospital and brought a priest with him, who held and blessed Rupey. And then we had to say goodbye, and come home. Without our son.

That day, and the blur of days that followed were the hardest and saddest of my life. I know I got out of bed and functioned; I had to, I had a one year old son who needed me. However, looking back, I honestly don’t know how I did it. There was a funeral that we organised. I remember collecting the catering for it the day before, and talking like a normal person to the caterers who thought the food was for a party. We took Freddie to the zoo just 8 days after Rupey was born-how did we do that? We went to a 1st birthday celebration, and I sat there, sang songs and ate cake. I think, looking back, I was just in shock, but gradually, through Simon’s love, Freddie’s innocence and need, and our families’ support, I gradually came back to life.

We immediately started trying for another baby. Everyone deals with things differently, and I knew that the only thing that could go any way to really healing me would be a new baby, who could finally complete our family and mend the jagged scar across my heart. I couldn’t believe it when, less than three months after Rupey died, I stood in the bathroom staring at a positive pregnancy test.

My pregnancy was fraught and stressful, but the NHS were wonderful and after 39 weeks, 10 scans and weekly counselling sessions, our beautiful little Alice Poppy Rainbow was born. She will never replace Rupey, and she will never take away what happened, but she has completed our family, and now 3 years after it all happened, life carries on.

Freddie and Alice talk about their brother every day, and every year on his birthday, we let a balloon off where he is buried in his memory. We are so grateful for the precious memories we have of him, and will never forget the peace in the room on the night he was born. We will always love him, he will always be part of our family’s story, and he has changed us all for the better.

I've been seleted to run the Virgin Money London Marathon for SOFT UK  in April  and I  will think of him every step of the way.
Susannah Quill x

Created: 22/01/2019 18:08

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