Been a while since I’ve blogged, but still living day to day with this pregnancy, and set myself the goal of blogging again once we were twenty weeks – which was yesterday. A milestone which had followed an absolutely horrendous week – physically, mentally and emotionally.
Let me explain. At ten weeks we had paid for a private test called “Harmony”, which looks at the chromosomal abnormalities a baby might have, it’s meant to be around 99% accurate, as opposed to the NHS blood screenings for these that is approx. 85% accurate. Everything came back clear at the time. Then when I had my combined NHS screening at twelve weeks, although the Nuchal Translucency measurement (to do with the amount of fluid around baby’s nuchal fold – high fluid could be a sign of Downs Syndrome) was normal, 1.5mm, my results came back as 1 in 40 for Downs, so there the blood test was showing something up. At the time, my consultant said not to worry as I had the results from the Harmony, which were far more accurate. Then four weeks later (about two weeks ago), she was looking through my file at a clinic with her, and said it wasn’t good enough that they had only screened on 8% of Fetal Cells in the Harmony test, the NHS like a minimum of 10% apparently. So she order the SAFE test (Harmony just by another name) to be done then and there. We waited an anxious seven days, and on Friday last week it came back with bad news – 1 in 127 risk for Downs.
We were in turmoil. My consultant was away for another two weeks so couldn’t discuss with her, and we were at a loss of what to do. We were offered an amniocentesis test – which basically means putting a very long needle into my uterus to take some of the amniotic fluid, to test the baby’s urine. This was a diagnostic test, that would tell us one way or another – great. But not great. It came with a risk of 1 in 100 chance of miscarriage, and given my history, it felt like my chances of miscarriage would probably be higher than that. My main thought being, what if we do this, and we accidentally kill a healthy baby, I would never forgive myself. But my head was also saying, I can’t spend the next twenty weeks wondering, it would affect my relationship with Matthew and Dylan – as would be too much pressure and distraction and not being able to focus on everyday life. I was also worried that the baby might be born incredibly unwell, perhaps with heart problems, and not survive birth and then I would have carried on pregnancy building up hope, to only then be devastated all over again. But all that being said, I don’t think we would have ever gone through with an abortion unless scans really did show a problem with the baby’s heart or brain which meant he would have no quality of life. I don’t think anyone really knows what they would do in this situation, until you are forced into it. So I hope nobody judges me that we even contemplated what we would do if he did have Downs, not unless you have been in my shoes.
On the Monday morning I went to see a specialist at the hospital, and she said in reality we had now had two “positive” tests for Downs, so in most cases they would strongly suggest the invasive test. She said it’s better to have it now, as it can bring on birth, if we left it later, then the baby could be born extremely prematurely, with severe health problems, so they normally say before 24 weeks or not until 34. I called Matthew and we decided to at least book at appointment the next day at St George’s in London, where we would have a detailed scan and then the test, but that we could always cancel once we had slept on it. Not that any sleep was possible.
The next day we agreed to drive to Tooting, knowing that we could pull out last minute. The staff there were fantastic, and I had the most detailed scan I have ever had, they even called into the room one of their main consultants in fetal medicine to do it. She said although the scan showed no physical problems, the only way to truly know was to do the test. We decided we couldn’t go through the next twenty weeks worrying about it, so went ahead. It was incredibly painful. When it was done, I went a bit dizzy so had to sit and wait for a while before we left. They also took some of my blood for a research project they were doing on the test, as I had had three different results from the previous blood tests, they thought it would be an interesting case to add to their research. Wasn’t ideal, but at same time, they had been so kind and so thorough that I didn’t have the heart to say no.
The next 48 hours were a bit of a blur, it was the “high risk” chance of miscarriage, so was ordered on strict bedrest. Luckily Matthew was able to work from home to do the nursery runs etc. – as I wanted to avoid lifting Dylan. Unfortunately, on Wednesday night I started feeling ill, very hot and headachy as well as pain when I went to the toilet. So, mum and dad had to rush round to look after Dylan whilst we drove to the hospital. We were there for four hours, well gone midnight, with more tests completed. There were infection markers in my urine and blood, which for me felt like it was the beginning of the end, as that’s what had happened in the previous two losses. They gave me some antibiotics and told me to come back if I got cramping/bleeding etc. Luckily, I didn’t, and started to feel better a couple of days later. Basically I spent an entire week in bed, in a heatwave, wondering when I was going to loss my baby again. I am very fortunate in that my boss told me to take all the time I needed and not to give work a second thought, so at least I didn’t have that to worry about on top.
On Thursday afternoon we got the results – everything was clear. We were delighted, but at the same time, I couldn’t help thinking, that’s only the next hurdle we have overcome, I am convinced there will be more. I think my consultant will be surprised that we had the test, but sometimes I think you have to roll the dice, you have to have faith that you have had your cruelty in life, and it’s your turn for something good to happen.
On a positive note, I had a scan on Tuesday, and everything seems fine, but at the back of my head, I always think “for now”.
Here is our little man, it reminds me of the Rodin’s The Thinker statue… or should that be Bruce Forsyth?!
As it stands, I am twenty weeks, with the plan of coming off the progesterone at 34 weeks and being induced or having a C-Section at 38 weeks – as the consultant does not want to risk my placenta making it all the way to forty weeks. They will also scan at 22, 26, 30, 34 and 38 weeks as a minimum. Each of these will be a milestone, as will 24 weeks, as this is the “viability” stage – when the baby could be born and potentially survive. So although I am hoping the next four weeks go quickly, I also want to make sure I am not wishing the time away, as I know it’s important to enjoy every minute with Dylan, as he is still my little miracle.
Muddled Mummy 