We are thrilled to discover that we are pregnant with our third child! Secretly hoping for a daughter, but happy either way since we already have one of each – just so long as he or she is healthy. We already feel strongly that this is a little girl.
14/03/2006 (email to family & friends)
Bit of a sad letter Im afraid. I went in to the hospital last Thursday with extreme pains in my right ovary area, and since I was 16 weeks pregnant and prone to miscarriage I also had a few other obvious concerns. They had to do a scan which I was very tearful about as I never scan during pregnancy, but I reminded myself that ultrasound was for this specific purpose, so I still wasnt going against my beliefs.
The doctor said that the baby was fine, but he could see a five to seven centimetres cyst on my right ovary, which apparently needed to be removed via surgery (and general anesthetic) immediately. I was very upset about the idea of how this would affect my baby, so got in touch with my homeopath who prescribed various remedies. The next morning when they scanned they found that the cyst had mysteriously collapsed – no surgery necessary! I was very happy, apart from the fact that it was obvious that they werent telling me something. They wheeled me off into a room for some time and then I was whisked away for yet another scan (on a bigger better machine).
On this machine they didnt even look at my ovary or cyst, they just kept scanning my baby over and over which was making me very emotionally uncomfortable and concerned. I decided that I wanted to look at what they were seeing, and even without my glasses on I could see that there was fluid around the babys brain, inside the internal organs, and under the skin. Foetal Hydrops (I think it is also termed Hydropsis Foetalis), and also suspected Turner Syndrome. Oh – and it’s a girl.
One of the specialists kept saying over and over how she couldnt believe that they were even looking at this because this baby should have miscarried at 7 weeks – she was almost excited. They told me an amniocentesis was necessary, and I consented since an amniocentesis would give me a clear indication of what was going on. Greg was in the waiting room with Angus, so he wasn’t allowed in the room with me – no-one had told him anything at this stage.
I held off my tears until after they had poked the needle into my womb because I knew I would need to keep still and once I let the tears start it would be difficult to stop. The one thing they could tell me is that no baby with these symptoms had ever made it past 24 weeks gestation. This actually came as a relief.
They told me that most women choose to terminate. I told them that I wasnt most women and asked if there was any harm to me to just let nature take its course. They said that there was no maternal risk, but felt that I would be better off just getting rid of the baby. I said I would be happy to just let the baby die and birth it naturally and that I could live with events being in the hands of the universe quite happily and feel whole and healed. If we had opted for termination then we were taking matters into our own hands and giving control to the medical model and I would forever feel guilt, shame and hate.
It feels strange to be almost halfway through the pregnancy and to know that our baby will die, but it is a strong reminder of how close birth and death are on the life cycle.
Okay – so I am 19 weeks pregnant today and Phoebe (our wee girl) is still ticking away with as much determination as she can muster. Going by the signs, she is expected to last for another 1-3 weeks, but of course she could pass/go at any time (die sounds so dramatic, and I am SO not into being a drama queen although I like the straight-up honesty of die).
The specialist said that she feels it is my healthy living that is the “problem” – she suggested that perhaps if I sat on the couch in front of the television with some pizza and coke then the baby would die sooner and I wouldnt have to “go through all this”. Needless to say I am continuing with my healthy living!
We have made a new decision based on current circumstances and discussions with my gorgeous midwife friend, Amber. Since there is quite a chance of birth not happening spontaneously we will have to go for induction if Phoebe is still in my womb 3-4 weeks after dying (if I can wait that long to be honest).
I like to think that my body, if it does decide not to spontaneously birth her body, is simply determined to protect and nurture to full-term rather than being a case of not functioning as it should! There is apparently a reasonable risk of both retained placenta and post partum hemorrhage, and since my normal blood pressure is quite low it doesnt take much blood loss for me to pass out.
So taking all of that into account, we have decided that we will go to hospital for this birth. A very tricky decision for a dedicated home birther such as myself, however I must heed my own words in that home birth is perfect for normal births and problem-free pregnancies … this really doesnt come into that category, so needs to be given the due thought and decision-making that it deserves. Of course it couldnt be further from my ideas of a free birth, mind you the situation our Phoebe is in couldnt be further from my ideas of our next baby either!
Other than all of that we are just carrying on with life as normal, of course every niggle and lower back pain that I get makes me wonder if something is happening or if it is just par for the course at this stage of pregnancy. I know that we still have a large part of the adventure to go – in particular the physical birth process and emotional repercussions – but I figure that living each day as it comes makes more sense than to waste time and energy worrying about something that will be however, it will be regardless.
I have also been having dreams where I give birth and then cant find my baby anywhere and I have people telling me that I never had one in the first place … so obviously some stuff is happening on a deeper level around the idea of birthing without a baby (doesnt take a genius to decipher those dreams). And I have other dreams where I give birth to our next baby after this one and everything is perfect, easy labour, perfect baby – always a boy. And each time I am disappointed that it is a boy – we so wanted a girl and in real life feel a bit ripped off that we have to go back to the 50/50 odds once more! Definitely some issues I need to work through around that point.
I did ask the specialist if she could arrange a 20 week credit on my next pregnancy since I had already done this part. Even though I knew that it obviously wasnt something she could arrange I still felt strangely disappointed that she didnt say yes, we have a form you can fill out right here to get your hard work credited….
30/03/2006 (email to friends and family)
Feel free to ask anything – I am an open book and this is all as interesting as it is new and somewhat scary as far as I am concerned! Seriously though, there are so many wonderful positive aspects to this whole experience it is difficult not to get almost excited about the opportunities we have been given through Phoebes short presence. Plus I have had many moments in my life to test my strength to its absolute limits – so I feel they have served well to prepare me for this and the times yet to come.
Phoebe’s heart is failing and most of her bodily systems are also failing. Basically none of her organs are functioning properly, and to be honest I think that is easier than not being sure as to whether or not she will live or die. Turner syndrome is one of the spectral disorders where it can vary greatly in severity – she has complete monosomy X which means that every cell in her body is lacking a chromosome, i.e. XO rather than XX or XY. In some cases only a few cells are missing the chromosome.
There are plenty of girls and women with Turner syndrome who lead full healthy lives – when it is right at the mild end of the scale then it usually goes undiagnosed until puberty…when no periods, little sexual development usually leads them to the doctor who then discovers that they have no ovaries and then makes the Turner diagnosis. It is estimated that around 25% of all miscarriages are due to Turner syndrome, although this is only based on the tissue that has been collected and assessed….as we all know many miscarriages are never autopsied. Still – it must be far more common than we know!
I do get frustrated at friends and family members who don’t seem to be coping with the situation, and keep questioning whether or not I am dealing with it. Just because I am not losing the plot and screaming “Why me?” doesn’t mean that I am not acknowledging my true feelings. I get cross when other people seem to be making a bigger deal out of this than we are. It’s happening inside my body and if I am okay about it all then why the hell do others need to turn it into a “traumatic ordeal” or “horrific nightmare”? Somewhere inside me I do know that they have their own Phoebe journey and their feelings are just as valid as mine. And I know it is all because they love and care so much. In their shoes I would no doubt feel upset, frustrated, helpless and oh so far away.