15 Weeks

We had another scan today, this time at Norfolk and Norwich University Hospital, you can tell it’s a PFI hospital as you can’t find the entrance for the shops in the way.  The healthy baby is still healthy which is good but the acardiac twin has become grossly swollen so we’ve been referred back to Queen Charlotte’s next week.

Simon has blogged about it, so rather than repeat myself lookee here.


14 weeks

I had an ultrasound scan today.  Healthy baby is healthy and active.  The parasite twin is showing signs of swelling but is not of immediate concern right now.  I will have a scan at Norfolk and Norwich University Hospital next week, this scan will be to look the healthy baby’s heart, I’m hoping that everything will look tickety boo.  The week after that I have another u/s scan at QEH then we are back to Queen Charlotte’s for them to have another look.

We had a sliver of good news on Friday, the results of the triple test and nuchal fold arrived and the baby is at low risk of Down’s Syndrome 1 in 707 – no need for further investigation unless we want it.  As an amnio can cause a miscarriage and my risk of miscarriage is high enough already I don’t think we’ll go for an amnio.

And meanwhile in the background I will have my usual midwife appointments, which I’m very glad about, I like my midwife, she was my midwife while I was having Tom and we get on well, she’s sympathetic and supportive.  She rang me last week to see how I was coping, she’s a good un.  I’m seeing her this Wednesday.

Finally – I still own the flat I lived in, in Huntingdon, until Friday it was tenanted, on Saturday it officially went on the Market, the second set of people to view it put in an offer, which I accepted.  Hopefully everything will go smoothly as they have their mortgage and solicitors in place it will complete quickly.

Queen Charlotte’s

We had the first appointment with the consultant at Queen Charlotte’s Hospital yesterday.  They have a department dedicated to the more complicated pregnancy.  Perfect place for us.

With each scan the audience gets bigger, at the first it was just the sonographer, the second sonographer and student, at the third the consultant sonographer and a student midwife.  Yesterday for the forth scan we had two sonographers, the consultant and another doctor.  If I get to thirty seven weeks they’ll have to show the ultrasounds on a big screen in one of the hospital conference rooms in order to give all the interested parties a view.

The consultant confirmed what Queen Elizabeth Hospital had said, it is acardiac twin and a seemingly normal twin.  He said that there was no agreed way of treating this problem, and whatever we do will carry its own risks.  He was happy that at the moment the parasite twin was not an immediate threat to the healthy baby, who was healthy at the time of the scan. He said that if we got to roughly 20 weeks without intervention the likelihood of it being needed drops remarkably.

I think I babbled at this point. I wanted to say I want to take the route that gives the baby the best possible chance of survival but I have no idea what came out. Fortunately what he is suggesting seems to me to be a good way of managing risk.  He wants me to have an ultrasound every week so that they can check the rate of growth of the twins, how the heart of the viable twin is coping. That can happen at QEH. If there is any sign of trouble I could be back at Queen Charlotte’s within 24 hours if necessary.  He did warn that situation could take a turn for the worse very quickly and that I could lose the baby between scans without any warning.

He warned us that there was a far higher chance than normal, that the viable baby has a chromosomal problem ie Downs.  We need to discuss with our local consultant on Monday about whether the combined test needs to be redone, I think she said that it would probably be wrong as the sums would have been calculated on the basis of a singleton.  When we had the nuchal fold scan done, sonographer told me that the baby’s nuchal fold scan was well within normal limits but we do need to check.  I’m hoping that the results give us a very small risk of downs so that we can avoid having an amnio done.

He also wants the healthy baby to have a heart scan so that they can have a detailed look at how it’s bearing up.  This will be done either at Addenbrooks in Cambridge or at Norfolk and Norwich University Hospital in Norwich before we go back done to QCH for another appointment with the consultant.

After the appointment I felt much happier than I have done since Friday morning.  The consultant didn’t tell us anything that we hadn’t already been told by QEH but he did say that the healthy baby was presently healthy and that there was no immediate need for treatment. Our risks haven’t changed, but for Wednesday at least it seemed that they had reduced somewhat.

The One Where Things Got A Lot More Complicated

I’m pregnant with twins but one has no chance of life as it has no heart and its upper torso is missing.

At my first scan we saw a small round mass behind the baby, as the sonographer couldn’t detect a heartbeat, we assumed it was dead. Sad, but really we had nothing to complain about.

However our baby was too small for any decent measurements, s/he was not as far along as we first expected, so we all trooped back on Wednesday just gone for scan number two.

The baby had grown, measurements were taken, However the “dead” twin had changed as well. I could see what looked like a spine developing in it, structure that hadn’t been apparent last week, it had grown but still no heartbeat. The sonographer said that she wanted the consultant to take a look at the dead twin and I would probably see her in a fortnight’s time for a further scan.

Friday I received a call from the lead midwife on the obs & gynae outpatients ward. The consultant had looked at the scans of the twins, decided that I was an urgent case and she wanted to see me on Monday, today. The midwife explained that they believed that the “dead twin” was very rare pregnancy complication called an acardiac twin.

I had that scan today, the consultant confirmed that I’m carrying what appears to be a normal baby and a non viable one. The non viable one is a parasite on the baby, due to connected blood vessels in the placenta, the healthy baby is pumping blood around for two. According to The Fetal Treatment Center of the University of California in San Francisco

This is a very rare problem, happening on average once in every 35,000 pregnancies. One twin is usually completely normal. The other is body-like tissue, often with legs and a lower body, but no upper body or heart. Abnormal blood vessels on the placental surface allow the normal twin (aka pump twin) to pump blood though the tissue of the abnormal one. Because the pump twin heart has to pump for two, there is a high risk of going into heart failure. This would then lead to death of the normal twin, unless it is delivered if it is far enough along in pregnancy.

As it is rare, QEH doesn’t treat it, I have been referred to Queen Charlotte’s Hospital in London who have the expertise to tackle the problem.

We were devastated on Friday but are now feeling a bit of hope. The untreated rate of survival for the healthy twin is between 25 and 50 % the rate of survival with treatment is between 75% and greater than 85%.

However healthy is a relative term in this case. It is at risk of brain damage due to loss of blood/blood pressure, it is at risk of damage to the heart from the pumping for its twin and there is a higher chance that it has downs syndrome.

Extreme premature birth is a risk of treatment and also sometimes the best chance of survival for the viable twin. Prematurity carries its own risks as well. Our chances of having a live baby with a fighting chance of a full and healthy life are reasonable but not guaranteed. These are the odds we have to live with as there is nothing I can do to improve them except rely on the miracle of science based medicine to give us the best chance possible