I promised that no matter what I would post my experience as reading other peoples really helped me along the way. I’ve not known anybody personally who has been through this, so I relied on forums during the wait!
Im currently 30, my partner is 31, I will be 31 years 1 month when baby is due in February 2023. This is my first pregnancy and I have been with my partner for 13 years and we have been trying to conceive for the last two. Safe to say we were very pleased when we found out we were expecting!!
We went for a private early scan, all looked fine. Went then for our 12 week scan in Leeds, despite baby being in awkward positions after 30 minutes of trying, they were able to get measurements; all looked fine, 12 weeks 2 days. We opted for the combined screening and so I had my blood tests the same day. We had had the scan and blood test on a Thursday and were told if all seemed ok with the blood testing we would receive a letter, if not a phone call within 5 days. On the following Wednesday I had a call from the screening department at St. James. I was told that I there was an ‘increased risk of having a baby with Down syndrome’. She asked when we could come in to discuss the results and we were seen later that same day. It was explained that my hormone levels were higher than usual. I did find out after searching online after the appointment that my PAPP-A was actually low but this wasn’t mentioned. Apparently high hormone levels and low PAPP-A levels are indicators or Down syndrome.
My blood results showed;
hCGb: 3.53
NT: 0.85 (1.30mm)
PAPP-A: 0.44
This gave us a higher risk results of 1 in 112 of our baby having Down syndrome. For Edwards/Pataus it was 1 in 92, 792.
We were given four options for next steps - do nothing and continue with pregnancy, have a diagnostic tests of chorionic villus sampling (CVS) or an amniocentesis, with both carrying a small risk of miscarriage. The fourth option was to have Non-Invasive Prenatal Testing (NIPT) which is basically a blood test of the mother, which examines small fragments of DNA of the baby. It can determine if there is a chance that that the baby is affected by Down’s, Edwards’ or Patau’s Syndromes, it is not diagnostic but is much more accurate than the standard combined screening. We were told results could be 2 weeks but currently they are coming back within a week. As there would be no harm to the baby, we opted for this. I had my bloods taken immediately and we dropped them straight off at our post office.
We very quickly decided to go for a private NIPT as we felt that we needed to do everything possible to get results back asap and so we paid £400 for a scan and NIPT testing (Harmony) privately the following day (Thursday). The scan was tense, and nothing like we had experienced at our 12 weeks scan. I was told three times to relax and breathe when they were trying to scan as I was so anxious.
Whilst it felt like AGES, we received our results very quickly, right at the end of the day on the Monday from the NHS. Thankfully, it came back low risk. We were told nothing more than that. They checked we wouldn’t want any further testing, ie. CVS or amino. Later that week I received a letter which said ‘lower chance results’.
Now came the LONG wait for our private scan results. After me chasing numerous times after being told it would take no more than 7 working days, we got them on the 8th working day (13 days in total) after me ringing a final time and asking where on earth they were ! I was told I’d get an email by 8pm that day, but that time passed so again I called and the lady gave me the results over the phone. She said there was a backlog due to the bank holiday. I was also told the baby’s gender, a girl, despite me being convinced it was a boy!
I know it sounds crazy but my anxiety after this experience was through the roof and whilst we had the NHS results back I kept thinking it might have been a mistake and I wanted to be doubly sure. So whilst some may say it was a waste of time going private I would do it again for sure. Next time, I would go at 11 weeks to hopefully have results before the 12 week scan. As the days and then weeks went by, we felt in limbo, I felt horrible for not being excited, every time I threw up I was anxious this was because of my abnormally high hormone levels which reminded me of the potential reasons this might be!
My heart goes out to anyone else experiencing this and have everything crossed for you that your results come back as low risk. <3