The last few days, I have been feeling a bit down .
Finding out about a pregnancy five months into the gestation has proven somewhat of a chore so far. First, I missed all the required checks that are to be done at 12 weeks. Second, I missed all the required checks that are to be done at 20 weeks. Third, I have been wrongly advised about Down Syndrome screening by my hospital.
The first of the Down Syndrome screening is carried out between 11 and 14 weeks. This is the Nuchal scan when the build up of fluid at the back of the baby’s neck is measured. This test offers a 94% accuracy rate.
The second Down Syndrome screening is offered at 20 weeks via a simple blood test. This picks up the baby’s chromosomes through your blood but only offers a 60% accuracy rate.
Depending on the results of either of the above, you can go home happy knowing that the chance of delivering a baby with Downs is small, or, you will be offered an Amniocentesis test. This is the most intrusive and requires a slim needle through the stomach and into the womb to extract a sample of the fluid from the baby’s sack. The chromosomes in the fluid are tested and although invasive, this gives you the best result. However, if done earlier in the pregnancy it can cause miscarriage. The usual cut off for this is 20 weeks.
When I was pregnant with Bambina I didn’t endure any of this and perhaps quite ignorantly on my part, I didn’t do much research given that Bambina’s nuchal tests results were incredibly low risk.
Three weeks ago when I had my first, emergency, scan at 21 weeks and 2 days, I was told by the sonographer that I would do the blood test screening at my next visit. I didn’t have any reason for concern at that point.
Two weeks went by and the time arrived for the next scan. On Thursday last week I was told that I had been misinformed and in fact, I had missed the national cut off for the blood test screening. I was horrified. Did this mean that I had to go through the next three months not knowing whether I am carrying a child with Down Syndrome? Why on earth didn’t the sonographer spot that I was on borrowed time but went ahead and booked me in for a bloody test two weeks past the deadline?
The Italian and I had obviously discussed our options. Woman in their forties, late forties, give birth to bouncing healthy babies all the time. But, we were not sure that our lives could afford looking after a child with Downs. But what was the alternative? Termination? Adoption?
A flurry of questions ensued: What if it is? How severe might it be? How do you find a child minder? Are there any? Would it face a life of constant investigation? Would the italian have to give up his job to look after it? What impact would it have on Bambina? Is that fair? What if something happened to us, what would happen to the child then? Surely we couldn’t ask an elderly grandparent to take the burden? “Burden”. Is that how we would feel, as parents, that our child was a burden?
The obvious reality is that many people with Down Syndrome grow into healthy, fun, fit children and progress into adulthood with independence. The average life expectancy is actually 50. Some work and study, some live on their own. However, some need constant attention. Some have huge behavioral and health problems.
The sonographer advised me that the cut off for the blood test was at 21 weeks 6 days. That meant that I had only a four day window in which to do it. A four day window that the previous sonographer two weeks prior had failed to notice. A life long critical decision had been taken out of my hands and forced upon me in the blink of an eye.
I cried. I sat down. I cried. How could someone be so careless? I enquired about Amniocentesis and was told that an appointment would be booked for me to speak to a consultant.
I went home. I cried. Once I had wiped away the tears, I called Bupa to confirm the deadlines for the tests to be done privately. However, all private hospitals are bound by the same national guidelines as the NHS. However, my private consultant told me that according to the national NHS guideline, the cut off for the blood test is 20 weeks whilst the cut off for amniocentesis is 22 weeks. I had in fact missed everything!! The original sonographer was wrong on two counts.
I spoke to Marie Stopes, the British Pregnancy Advisory Service (BPAS) and Spire Health Care, another private company. All confirmed that at 23 weeks and 2 days there was nothing more I could do but hope for the best.
Eventually, after several heated and tearful phone calls from me to my hospital, I finally got to see the consultant on Friday morning. She reassured me that according to the scan and foetal measurements, everything looked fine but that she obviously couldn’t offer that as a true medical diagnosis “and anyway, the blood test is only 60% accurate”, she said. That would have been 60% more peace of mind that I would have had if they had not have taken the choice of having the blood test away from me!!
She continued, “We will not offer amniocentesis at this stage as the risk of damaging an otherwise healthy child by forcing pre-term labour far out ways the risk of a child being born with Downs. However, if at 32 weeks you are still dissatisfied we can carry out the amnio then and if you so wish, we can carry out a termination”.
Ok. After carrying a child for eight months, feeling it kick, move, breathe, hiccup, you would carry out a termination if I so wished?? Is that even legal?? Who on earth agrees to that? At 32 weeks, even now at 24 weeks, the decision has been made for me because your STUPID, incompetent staff didn’t do their jobs properly!! How can I even consider anything else now but sit back and pray that God has gifted me with a healthy child?
I battled and fought and finally got an appointment next week with a Downs specialist from Kings College. She will check my scans and measurements and compare that to those of a Down foetus. Again, this wont be a medical diagnosis but purely to set my mind at rest, as best as can be under these circumstances.
Apparently Down Syndrome can also be detected by a scan as Downs children do not have a nasal bone at this stage, the base of the neck is thicker and organs may appear displaced.
Speaking to the consultant won’t change anything but it may help me feel a bit more reassured, it may help me chill out a bit for the next three months and try to enjoy being pregnant with our second child. All I can literally do now is wait, hope and pray that this was all a big storm in a tea cup.
So yeah, you could say, I’ve been feeling a bit down.
Marie Stopes – 0044 845 300 8090
BPAS – 0044 845 30 40 30
Spire Health Care – 0044 208 950 9090