So what does £300 get you for a private blood test. It gets you a result in 4 days instead of 5 and a phone call from the same screening midwife with the results. However this time the phone call I received was not the one I had hoped for although deep down I knew what she was gong to say before she said it. The midwife was lovely she made sure I was available to talk and that there was was somewhere I could talk freely with her and not be disturbed. Then she just said
“your blood results have come back and it shows a greater than 95% chance of Trisomy 21 so it is most likely your baby does have Down’s syndrome”.
My heart sank but I was not surprised. What I was more surprised about was how calm I was on the phone and how I managed to hold it together as she spoke to me. She relayed to me the options I had which had now reduced to three.
1. Do nothing and continue with the pregnancy and they would refer me to the fetal medicine team for the 20 week scan.
2. Make an appointment for an amniocentesis which would give a definite diagnosis or
3. A termination.
Again she advised me against making a decision to terminate without a definite diagnosis as the IONA test is a screening test and not diagnostic. There is still a small chance I could have confined placental mosaisim in which case my baby could be fine. I originally was so against an amniocentesis because if the risk of miscarriage but when you are faced with actually making a desicion you think differently. I asked her when I could have the amniocentesis done and she said she would have to talk to the consultant to see when she would recommend and when the next available appointment could be. I told her that I would need to talk to my husband and my mum about it before I made the choice but asked if she could find out those details for me in the meantime. She said she would and would call me back when she had spoken to the consultant and that she hoped to let me know before the weekend. So I hung up the phone and sat there for a minute. It was late in the afternoon and I was due to finish work in an hour or so, so I went back to what I was doing. I thought I would talk to my husband when I got home.
So I calmly went back to work and started doing the end of day tidying up that I usually do, when a work colleague came in to the room and asked me if I was ok. And that was the end of the calmness. I broke down, I couldn’t hold it in anymore, I was trying to be strong but I just couldn’t do it anymore. I couldn’t speak, I couldn’t tell her what was wrong, I was too busy sobbing that words would not come out. But it was ok she just gave me a hug and told me that what ever it was crying would help. But I couldn’t stop. I tried a few times to get myself together so I could carry on and just finish the day but it was no use, the tears just kept coming. All I could think was I can’t even make a baby right. Why when I have spent most of my life dreaming of having my own children does that dream get taken away? I think it became quickly clear to my colleague that I could not continue with my work and they sent me home.
I cried in the car on the way home and cried again as soon as I walked in and saw my husband. As soon as he saw me so upset he hugged and and sat me down and told me to tell him what was wrong. I told him about the phone call and explained what the midwife had said. He was in shock. He didn’t say much just sat there next to me for a bit. Then he asked what I was going to do. He said
“you want to keep the baby don’t you”, “I’m behind you 100% whatever you want to do I will be there”.
I told him about the amniocentesis and that I felt I needed to know for sure and he just said if that was what I wanted to do then that was fine. The risk is small but there is still a risk of miscarriage but I felt I couldn’t be in the limbo of not knowing for sure for that length of time. I felt that if I knew I would be able to accept it and move on. I then phoned my mum and she talked to me for a long time about what I wanted to do and that we both felt that a termination was not an option. I didn’t think I could live with myself if I did it. And what if the same happened again. Is a second baby with the same problems worth more than the first? No. My mum then told me about all the things other friends and family members had gone through with similar things and that an amniocentesis isn’t as bad as you might think. And that if I chose to have it done I would know where I stood and be able to plan and move forward. I felt a lot better after talking to her and that night was able to calm down eat dinner, throw up and then go to bed. Yes I was still throwing up all the time. Early pregnancy is horrible even without having extra emotional worries added on top.
The next day I got another phone call from the screening midwife. She had spoken to the consultant and she had advised the earliest I could have an amnio safely would be 15 weeks. That was two weeks away! So I made the appointment and began the wait which would feel like a life time.