Alicia: Not Understanding His Condition

It was our 12 week scan and we went in so excited yet the lady who scanned me didn't look at me… that's the first time I knew something was wrong.

“I am really sorry yet you have an extremely high NT.”

My partner looked at me, his face full of tears, not understanding. She went out the room to get a specialist and the tears started, the last time I cried like that was when my OH’s dad passed away last year, as my OH was in so much pain. It killed me… this felt the same, well worse.

This was the first time we met our specialist midwife, I am so pleased we got her.

Over the next few days I decided to get the private harmony test, a blood test which could tell me if my baby had a chromosome disorder. Two weeks of waiting hurt me so much. The weekend before we were due to find out we stayed at bumble bee barn, we chose it as we called baby bumble before we knew their sex. On the Sunday my mobile rang, it was our specialist. “Great news, it’s all clear.”  I couldn't speak. “Would you like to know the sex?" Of course!!  “It’s a boy!!" My partner frantically rang family.

The next day we went in for a scan to see if the fluid had increased and it hadn’t, which wasn't a good sign. He was classed as hydropic. We had an anxious two week wait to see a consultant. Those two weeks killed me. I spent time listening to Leo's heart beat at home.

We sat in the waiting room with excited families. I felt envious, why us? I can’t explain it yet I knew they were going to tell me bad news. On that terrible day they did, I can only remember the words "I am sorry.” We were booked in on Friday to be induced and deliver baby. Leo was 17 weeks.

The day before I insisted on an amnio, the consultant said to me the baby had a chromosome disorder yet this was disputed, either way I needed to know.

After the amnio Friday came, we were given a quiet room and we waited 15 hours for Leo to arrive. He was wrapped in a white hand knitted shawl and he was beautiful. I held him, we cuddled for hours and the priest came and blessed baby. Those hours were the best times as he felt like our baby, not just a scan picture. I whispered that I was sorry to him and told him to find peace and look after us.

Onto our Leo's condition… we got the amnio results which came back as him having trisomy 13 mosiac, the harmony test hadn't picked this up. This meant he had no chance to little of being born from day 1. That hurt. We were told that this was not inherited however unfortunately over the next two weeks I became unwell and was admitted to hospital. On that day my world fell apart even more. My midwife specialist came to see me. “I am really sorry, we got the full karotype back from the amnio, it's translocation 13. We need to get you and your partner’s karotype tested.” OMG, we might not have anymore children! My heart ached.

A day later, I got discharged from hospital and we went to our Angel’s funeral. It was beautiful. We gave him a blue balloon in the sky to play with. We even had the same blessing he had had when born. We have decided to get his name in the baby memorial garden, we’re waiting 6 weeks for this to be done.

I hurt so much after the funeral. We had to go back to the hospital to get tested and the next day I had to go for a d and c which I am still recovering from. We now have another week’s wait to see if we are a carrier and, if we are, we will have to look at other options as you have a 1 in 4 chance of this happening again. We just couldn't risk that. We would possibly go for PGD which is where they extract our eggs and sperm and only get good matches or we would go down a donor route. Or even possibly adoption.

I can't imagine getting through the next days quickly but I open Leo's memory box and it makes me smile. My little boy gave me something so special and he reminds me there's always hope.

xx Angel Leo, 21st February 2014 xx

Natalie: Right Where I Am 2013: 8 weeks 5 days

Where I am today I never expected myself to be. There are two 'should be' outcomes; one before I got pregnant and the other once I'd got pregnant.

If you had asked me on 19th February 2013 where I should be today I would tell you I would be finishing my first year of my nursing degree eagerly anticipating the start of my second year.

If you had asked me on 20th February 2013 my answer would have been finishing my first year of my nursing degree weighing a couple of pounds heavier due to the 25 week old baby in my belly eagerly anticipating the arrival of my baby in October.

Sadly neither of these are true. Unfortunately life never goes quite how you expect it, sometimes for the better and sometimes for worse.

I had never planned on getting pregnant. I'd wanted to be married first, have a nice house, get a degree and a good job etc first but when the second line appeared on the pregnancy test I couldn't have been any happier.

Fast forward 7 weeks to the 12 week scan and my world came tumbling down. I was told my baby had a large cystic hygroma which occurred in babies with chromosome anomalies and I should have a CVS. I was terrified of the outcome and did research into what T13 T18 T21 and turners syndrome was. It's safe to say I was devastated at what Dr Google said. One way or another my baby was very poorly.

The CVS result came back negative for the 4 above problems but discovered a deletion from chromosome 7 which revealed I had something called a balanced translocation.

I had to make the heart wrenching decision to carry on with a baby with the possibility my daughter wouldn't survive to full term and if she did would have a life with no quality to it or to save my baby from pain and to terminate for medical reasons. Deep down I knew already what I had to do.

Friday 3rd May 2013 at 16wks+3 days at 19.44 my much wanted daughter Angelica-May was born sleeping weighing 110g measuring 17cm.

Today it has been 8 weeks & 5 days since she was born and 7 weeks 2 days since she was buried but there hasn't been a day I haven't thought about her.

So where am I today? I am sat in grieving unable to finish my first year of Uni facing the possibility of having to restart my first year if I can pull myself together. Cuddling the build a bear teddy I got with her heartbeat in it.

Not only am I grieving my daughter that never lived but I am also having to deal with the fact I have a chromosome formation that means this could happen again so easily. My only option is to have IVF PGD and if that fails ill never have my own children.

I may have made the decision to end my pregnancy but that doesn't make it any less painful.

Stacey: Right Where I Am 2013: 15 weeks

I have found during my short journey through child loss that this is often posed as a question; ‘how are you?’ My answer is, as always, with a smile on my face; ‘I’m fine.’ How can I say this? Well because I am, I am fine.

I no longer wait for my husband to roll over and fall asleep before silently crying myself to sleep for hours, I no longer wake up in the mornings thinking it has all just been a bad dream and I’m going to find that I am still pregnant with a healthy baby. I am no longer a prisoner in my own home afraid to leave the house, afraid to look at people, afraid to talk to them, afraid to answer the phone or open the front door to the postman. I am no longer unable to eat, to make decisions, to function, to laugh, smile, talk about my daughter, to see pregnant women or newborn babies.

I can go to work everyday with a smile on my face, I can serve my customers, manage my staff and make business plans. I can hold normal conversations without wanting to scream ‘how can you talk about such stupid things when my child is dead.’ I can laugh and joke like I used to.

I can do my crafting, walk my dog, clean my house, sleep alone when my husband works away, focus on something on the TV or a book I am reading, do the food shop alone, I can do all the ‘normal things’ that I used to do before I was even pregnant. In fact if you didn’t know me or spot the hand and footprint necklace I wear everyday you would never even know  that I had given birth to my beautiful little girl and then watched her die in her daddy's arms; that’s how fine I am.

Sometimes even I believe this. But when I am alone with my thoughts and I dare to scratch below the surface of how I am feeling, I know that I am anything but fine. Fine is the last thing I am feeling. I am wearing fine like a mask to protect me. Like if I don’t I will fall back down in those depths of hell and never get back out again.

If I am fine then why do I not dream at night, why do I touch my belly every morning when I wake, why do I have a desire to warn pregnant women of the dangers, why do I look at people who have newborns and wonder if they have ever had a miscarriage, interrupted a pregnancy, still birth or neonatal death. If I am fine why do I need my job so much like a pillar of strength, stability, self worth and routine but why do I hate it so much. I see no point to it anymore I am putting money in someone else’s pocket just to go home to an empty, silent house every night. A house once so filled with hopes and dreams now an empty shell, the silence so deafening, that room with all the baby things. If I am fine why when I craft can I not use pink wool anymore, why am I afraid to use it is it because I know it will make me cry. Why can I not write in my pregnancy journal, it still says that I am 18 weeks my last post was about how nervous and excited I was for the 20 week scan. Why can I not bring myself to write what happened during that scan, the news, the research, the decision, the birth, the after math. If I am fine why can I not bring myself to order my daughters’ headstone. Is it because I know it will make this real? Seeing my baby's name on a headstone there really is no denying it. If I am fine why do I look at my body in the mirror everyday and hate who I have become, how big I am, never have I been this big. But why do I not want to do anything about it? Is it because this is how pregnancy has shaped me and I don’t want to lose that, like it might be another part of my daughter that I have lost? The stomach, the thick glossy pregnancy hair, large breasts; I hate it but I need it. Why do I hide these thoughts and feelings. From myself, my husband, my family, my friends, my councillor, my colleagues and even other people who have lost babies. Why can I not just be honest.

When you ask me how I am why can I not just look you in the eyes and say ‘actually I am really sad, guilty, angry, lost I have no words to describe the pain that I feel.’

Is it because you have told me that I have to stop being sad now, I can always have another, it was for the best, at least she won’t live a half life in pain. Is it because you think I am insane, you move me to another workplace, demote me, take half my pay from me, tell me I am ill, that I need to get over this. You counsel me, you're meant to help me, but I know that you're paid by my company and that I cannot truly trust you. Is it because you just don’t understand and telling you the truth has already cost me too much.

You see your question of ‘how are you’ has damaged me even more, has made me become a liar, forced me to push my feelings aside and cost me my job. So how can you expect me to answer in any other way? This is the only way to protect myself so I will put my mask back on and tomorrow if you ask me ‘how are you’ my answer will be as always with a smile on my face ‘I’m fine.’