So we went to the hospital this morning to discuss Zoe's autopsy report. The long and short of it is that there is no discernible reason for her death.
However...
... there is something wrong with me.... at least, they think there is...
... so I had another batch of bloods and have to organise one more to confirm or deny their suspicions...
... and if there is, then there are implications for future pregnancies....
They suspect that I have the same blood condition that Graeme has. It's called antiphospholipid syndrome, or Hughes syndrome.
Since it's not inherited, the chances of both of us having it are like... I dunno ... a billion to 1. Anyway, they think I've got it. If I do, then I'll have to have an injection of a blood thinner (either heparin or a combination of heparin and aspirin) every day while I'm pregnant and have LOADS of scans etc. and I'll have to be induced - quite probably have to have a Caesar. I'm worried about the risks to the baby if I take heparin, but then, if I don't, there are risks for the baby with this thing anyway....
I did ask the consultant whether there was a chance that (assuming their preliminary diagnoses are correct) this thing could have caused Zoe's death. She was lovely, really, the consultant. Anyway, she replied that while this didn't cause Zoe's death, unexplained pregnancy loss is a characteristic of those with this syndrome. There is also a link between this and premature birth. (So it may well be that this, again, assuming that I do actually have it, is what caused Janel to be born so prem.)
I did ask her whether, had we known then what we know now, there was a chance that Zoe would still be alive. She refused to give me a straight answer. I suppose there's no point in going down the 'if' road. The fact is that Zoe is dead. There's a good chance that this syndrome is somehow involved, even if not directly. In my heart I feel that, had I known about this earlier, Zoe would still be alive. I would have insisted on an induction on the Monday when I felt something was wrong.
But then, she might still have died from SIDS. Just because she might have been born alive is no guarantee that she would stay alive. If anything, I think this whole experience with her has taught me that. There are no guarantees with pregnancies or births. There is no stage at which you can breathe a sigh of relief and relax, or think that you're safe, because you're not. You're not ever safe. At any stage your baby might die, despite what the books say. And it's pointless putting your trust in statistics, because you might be that unfortunate 1% (or whatever). As we were. And as we might be again...
... which is why they'd want to induce me if I fall pregnant again...
Oddly, this syndrome causes a variety of different symptoms, because there are at least 4 different variations of it. It appears that Graeme has 2 versions of it, so it causes both the extreme clotting of blood AND a form of haemophilia, at the same time! It is also common for those with Lupus to have this syndrome, which is why we were told a while back that Graeme has Lupus. He doesn't. If we were to remain in the UK though, my care would be managed by the Lupus unit at St. Thomas's, in conjunction with a special midwifery team, because my symptoms would be very similar to those of someone with Lupus. Freaky!
Then, if that weren't enough to think about, she wants me to have a proper fasting test for diabetes. I certainly had high sugar levels in my urine with both pregnancies, so if even if this tests negative, I need to keep an eye on it during pregnancy because lots of women only get diabetes during pregnancy.
Oh yes, and of course this means that I'm at high risk for DVT... so once we have the results of the tests, if it's positive, I need to get a medical letter to inform the airline and take with me when I fly, and I'll need to take lots of aspirin before and after the flight, and wear flight socks. Sigh! At least I'll know before I go though, which reduces the possible risk to me.
Interestingly, there is a contra-indication for those who have APS in using the Pill. For years I felt that being on the Pill was bad for me in just SO many ways, which is why we eventually came off it. I had decided that, once we'd had a second, I wasn't going to go back on it. Now it seems that, even if I wanted to, that wouldn't be an option for me.
Of course, all this doom and gloom talk is dependent on today's set of tests confirming the previous set. So maybe I'm fine after all. We find out in 3 weeks time. In the mean time, I'm feeling a bit shell-shocked actually. The thought of everything I'll have to go through if we fall pregnant again, of the high risk of miscarriage... I don't know if I'm up for that. But then, I really want another baby... to think that, at the root of it all, it was quite probably something in me that contributed to Zoe's death... I don't know if I want to risk that with another child.
5 comments:
Sighhhhhhh...so many ifs and buts, and I get the feeling they don't really know why Zoe died.....but they are trying every avenue.
I had 3 miscarriages after Debbie, for no apparent reason except ''if and but''...so they tried all they could.....and I had David.!!
Chin up ( very British) and take care.....will be interesting to see what South Africa says about all this. As to flight socks.......they make ridges down your legs, but do mean you can get your shoes on at the end of a flight.!!! Getting them on and off is the best bit!!!
bye for now.
Anne.x
PS its my birthday today...and at last the sun is shining!!!
Happy birthday! Glad that you've got sun your end... it's still pouring with rain here, and when it isn't the skies are so grey you need the lights on inside all the time!
I have found that having kids is a great people connector. It has forced me to interact with a much wider variety of people than I might have otherwise, and that raises the likelihood of meeting people with whom I "click."
As we all get older, our agendas for friendship (and our expectations) are different than they might have been during school/university or childless married years. Parents need other
parents. Kids need other kids.
I also find that certain people are friends for just one phase of your life, though not in a bad way. You meet each others' needs for the time being, or are thrown together because your kids happen to be inseparable, or you're working on a classroom project together, or some such other circumstance.
It has simplified things for me.
Anyway, my wish for you two is that you discover a different social landscape on your return home than the one you remember. You've both grown so much as your lives together have evolved. I think (I hope) you will find it different -- and easier -- making new friends as a young family.
love,
Jacqueline
Whilst it seems we may be out of touch; we are keeping up with your posts to stay informed.
It's hard not to play the statistics game, but there's really no point. As you say, you can be the 99% or the 1%.
Some trust in chariots and horses (and statistics) but we trust in the Lord our God.
My feeling about it all, though I haven't prayed about this, is that God helps us to conceive. He is the giver of all life. Tell Him your concerns, and then just go for it if you want another baby and feel God allowing you to want it. If He gives another baby life, then trust in Him, and expect a normal healthy birth EVERY time. Because that's what He wants for you and the baby. If something goes wrong again, then you will lean on Him again. Because that's all we can do. Remember that God walks with us in the dark valleys, rather than preventing them. Remember how God was so amazing to Janel and Luke in their premature states, and answered prayer time and time again. He is so much bigger than Hughes syndrome.
Much love to you three.
Kim and Phil
Praise God for kind and honest consultants.
Hang in there sis. We know it's not an easy ride - but God's got you covered.ok?
wanted to ask about the signing with janel. Did you write about it somewhere? I mean is there a reason for doing it. If so I missed it :(
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