Finishing Line

I blogged a few weeks back about how I wasn’t enjoying this pregnancy, it would be remarkable if I did considering all that has happened. What I didn’t make clear was how stressful I’ve found it since we got the first diagnosis. There have been mercifully few times of extreme stress, but I’ve lived with constant low level stress for the last 23 weeks or so. It’s really getting to me now, as I get bigger, slower, more pain and discomfort as we approach the birthing hour.

I’ve only had two periods of sheer terror where I thought we were not going to have a live baby. The first one was around when we got the diagnosis of TRAP Sequence. During the second dating scan the sonographer looked at the “dead” twin to confirm her colleague’s diagnosis that it was non viable. I looked briefly at the screen, saw that it had changed from the week before, but then the shutters must have gone down in my brain.  I looked away and put it firmly out of my mind. That was a Wednesday.

Friday morning, my brain woke up, I reached for my copy of “What To Expect When You’re Expecting” and turned to the “When Things Go Horribly Wrong” section. The only thing listed that described a changing “dead” foetus was a molar pregnancy, Dr Google added the very gruesome information that a molar “foetus” would, if left unchecked, continue growing until it enveloped and snuffed out its healthy twin. There was no recommended treatment that could save the life of the baby.

I screamed.

Simon had to leave me to go to work that morning, he apparently spent most of the morning looking for alternative diagnosis. He also contacted the obs & gyne clinic asking for someone to tell us what was wrong. He got one of the lead midwives, she told him that she had just been on the verge of ringing me; the sonographer recognised the dead baby as an acardiac twin and elevated my case to the consultant who had to review the ultrasounds herself. The midwife told Simon that they strongly believed that the “dead” twin was acardiac (no heart, no head) she also told him that it was treatable and the healthy baby had a chance. Si immediately rang me to pass on the news. “Good” news in fact as there was hope. That Friday morning, the time between reading about molar pregnancy to Si and the midwife ringing me to tell me there was a chance:  that was my lowest point.

The second time I thought we had lost the baby, was this Wednesday at my routine midwife appointment. She felt for the baby, then started to listen for a heartbeat and could not find one.  I don’t know how long it took her to locate it, but it felt like a lifetime to me. I tried to reassure myself that I had felt the baby move not just an hour ago but it didn’t work. When Jackie told me that she had got a heartbeat I broke down and cried and cried and cried. Which set Tom off so I had to try pull myself together for his sake. That was my other lowest point.

I can’t deal with this stress anymore, it’s a weight crushing me, I worry every time I realise the baby hasn’t moved for five minutes, I worry if the movement seems sluggish or too energetic. I told Jackie all this, she said enough is enough you need a date.

Jackie got in touch with the obs & gyne clinic and I got a call from my consultant yesterday. She was very sympathetic, offered to admit me until the birth if it would help reassure me and keep me rested. I declined as it’s not fair on Tom and I got hangar rash last time I was admitted. If I wanted I could have had a scan today for reassurance. She also told me that I could go to the day assessment unit anytime they were open if I was the slightest bit worried.

Most importantly she got how grim I was feeling. I don’t know what Jackie said but she must have got across the state I was in far better than I’ve managed to in the past. Maybe that’s because when I’ve seen my consultant we’ve all focused on the baby and how she’s doing, at my midwife appointments the focus is more on me and my well being. The result of all this is that my consultant said I could have the baby whenever I wanted, I’d been through a lot of stress with this pregnancy and I didn’t need anymore.

And, you know what, I immediately started to feel better. We discussed timings, I think we’re looking at either the Monday or Tuesday after I turn 37 weeks so Baby’s birthday will probably be the 22nd or the 23rd. Of course medical reasons may intervene and she might arrive before then, but at last we’ve got an end date.

Edited 12 August for sense and grammar.

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30 Weeks

Another good scan, the baby is doing well, she’s growing apace, the dopplers are good and so is the amount of amniotic fluid. If we carry on like this we are good for 36 weeks, possibly to 37 weeks. I’m in a lot better state too, I’m tired and achy but no longer shattered.

However there are two main things that could stop us getting to 36/37 weeks.

I’ve had a procedure that involves puncturing the amniotic sac I’m at a higher risk of my waters breaking early than for a normal singleton pregnancy.

Of course this isn’t a normal singleton pregnancy – it started out as being a twin pregnancy with one placenta, a placenta that was wired up wrong causing the malformation of the acardiac twin. The placenta has already had a “wobble” four weeks back, we are very fortunate that the baby hasn’t suffered, she isn’t small for dates or show any other stresses from placental insufficiency. We are also very fortunate that the placenta started performing its part again. But because it wobbled once, the chances of it doing it again are far higher than in a normal pregnancy even for a woman of my age.

The frustrating thing is we can’t put a figure to those increased risks, the consultant is very loathe to even try, partly because she doesn’t want us going away with a false sense of security and partly because the factors and events of my pregnancy are if not unique, pretty darn rare. That rareness means the medical literature almost stops being scientific data and starts to be scientific stories. I read in one abstract about TRAP Sequence that since it had been first described in the 17th century there had only been about 400 recorded cases, that not a lot to be going on with.

Even though the risks are higher than for a normal pregnancy it is not a racing certainty that the baby will be born preterm, it’s probably not even likely that she will be, but being prepared for it makes sense.  I have my hospital bag packed, it’s sat waiting by my side of the bed.  I’ve tried to research what might happen if the baby was born prematurely, but as it is so common the information Dr Google gives is somewhat garbled, repetitive, and loaded with anecdotes from mothers who have had preemie babies in the past and are now trying to reassure those who are going through the same thing.  Worthy and comforting but not really useful.

I asked my consultant to run through what would happen if the baby was born today, at 32 weeks, at 34 weeks and at 36 weeks, she and the midwife on the unit did one better they got me a visit to the NICU.

The babies were tiny, the atmosphere was calmer and more cheerful than I had imagined based on what I’ve seen on TV, and far more hopeful too. If the baby is born tomorrow, if she is pink, wriggly and making all the right noises, I would get a chance to hold her almost straight after birth before she’s transferred to the NICU.  Assuming that she didn’t need surgery, she would stay in the QEH NICU until term, getting out early would be a bonus. Surgery would mean transferring to a different hospital.  At first she would be in an incubator with various tubes going in and out as she would have difficulties with breathing, eating and maintaining her body temperature.  Survival rates are roughly 95%.

If she was born at 32 weeks exactly the same things would happen except they would expect her issues to be reduced and survival rates are even better.

At 34 weeks her weight comes into play, if she weighs more than 1.8 kilos at birth, she may not spend that much time if any in an incubator, she may go straight into a cot in the NICU – it does depend on her health of course.  If she’s a heavy 34 weeker she is far more likely to come home early, probably not with me but hopefully before her due date.  Survival rates are pretty much the same as for term babies.

At 35 weeks she’s very likely to be over 1.8 kilos, if she’s healthy at birth, there’s a very good chance that she would join me on the delivery ward after birth, only going over to the NICU for checks and tests.  Theres also a very good chance that she would come home with me.  At 36 weeks those odds are even greater and at 37 weeks she would have to be poorly for the NICU to see her.

Warning – these are typical timescales – our baby may not be typical, and for anyone landing on this page researching what happens with preterm babies these timescales are only good for the Queen Elizabeth Hospital, King’s Lynn and in this year.  Check with your hospital to see find out how they manage preemies it may well be different.

It doesn’t work for everyone, but I feel a lot more in control, (no matter how illusory it may be), now I know what the typical scenarios are for a preemie baby.  I don’t feel as scared of the NICU as I did before I went in, I was worried I would see the tiny tiny babies and burst into tears – I didn’t, I did have a wee cry but that was over something different.  And finally having seen the staff and the parents tending to the parents I have a good feeling we’d be in good hands.

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