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