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

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12 thoughts on “The One Where Things Got A Lot More Complicated

  1. My thoughts are with you all.

    It sounds like you have the best experts on the case, so here’s to being positive.

    jen x

  2. You know we are here for you and that our house is your house when you need to come to London. See you later.

    Love you xxx

  3. Pingback: One in 35,000 | Mere Bagatelle

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