Appointments ad nauseam

Yet another doctor’s appointment yesterday, with more already scheduled for the weeks to come.  This was the first one in the big city though.  We had to travel out for it on the first really bad day of winter out here (unusually late in the year), and were nearly late for the appointment.  Because of traveling, I had to take two days off of work for it.  Luckily, we got there just before the appointment started (rather miraculously), so they didn’t have to reschedule it.

I had an ultrasound, then a meeting with the director of the maternal/fetal health department of the big hospitals we’re being treated by and with a pediatrician at the children’s hospital who specialises in kidney issues.  As usual the diagnosis was the same: still no sign of kidneys, no amniotic fluid.  But, surprisingly, the growth was normal.  I am 29 weeks along, and baby is measuring 29 weeks in all the important areas–even, most shockingly, the heart size to chest cavity ratio.  At 20 weeks, the first specialist I saw hypothesised that by 24-25 weeks, the heart would take up most of the chest cavity since the lungs would no longer be developing due to low amniotic fluid.  Yet they’ve continued to grow (as we can only assume, based on the size of the chest cavity) despite the fact that I have not had any fluid for at least 5 weeks.  This was unexpected to me, and seems like it may have been rather unexpected to the doctor, though she always tries to be as dispassionate and emotionless as possible (which is definitely a strange juxtaposition with me since I can be very emotional, especially about certain things).  So we are definitely thankful for that.  Glory to God.

In light of the fact that baby’s growing on target, she said that we would aim for delivery at 36-39 weeks.  Once again, the timeline whiplash.  We’ve gone from 24-28 weeks, to “any time now,” to 32-36 weeks, to now 36-39 weeks.  She says that if the baby’s developing normally, the longer it stays in my womb, the better odds it has at lungs that will support it post-birth and enough weight to allow for dialysis.  She and the kidney specialist agreed that the baby must be at least 5 lbs. for dialysis to be possible–and bigger is better.  The doctor is still bent on C-section for me and seems to not want to even consider that any other option might be plausible.  It seems to me that they like C-sections because then they can fit everything into their schedules instead of waiting around with labour.  I want to be given options.  I want my baby to have the best chance at survival, but I also want to have the best chance at seeing my baby alive, and at not risking the health and safety of my future children.  Since my baby and I will be separated at birth, since I can’t deliver at the children’s hospital where the baby needs to be transported, I want to be able to be with my baby as soon as possible.  I have significant problems with painkillers of any kind, so the anaesthesia will likely make me delusional and ill for several days.  Even if it didn’t, they wouldn’t release me from a serious in-patient surgery in a couple of hours.  I’d be lucky to be released from a routine vaginal birth in a couple of hours.  I presented this to the doctor, that if the baby were transported and its health deteriorated and it died, I would never get to be with it, and she replied, rather stoically, “Yes, that’s true.”  She didn’t seem to think that was very important though.

Much of the appointment (post-ultrasound) was a lecture on the purpose of kidneys, how they develop, and what happens when we don’t have them (or they stop working).  I knew at least 50% of the content already, probably more.  Some things were new to me though:

  • Kidneys are not considered an “emergency” situation since renal failure usually occurs in about 5-8 days.  The real “emergency” is simply the lungs–making sure they can process oxygen and carbon dioxide and can support the baby.  Without lung function, survival cannot occur; kidneys can be delayed, especially if the baby isn’t fed (or at least, isn’t fed too much so that the body must dispose of toxins faster).
  • Kidney transplants (which would be done at 18 months or 2 years) are from adults, not babies.  Anyone can give the baby a kidney, as long as the blood types are compatible (the doctor eyed my chart, noting that I’m O-, and said, “Regardless of what the baby’s blood type is, you could give one of your kidneys because of your blood type.”).
  • Kidney transplants aren’t placed in the natural kidney spot, but in the abdomen or stomach (for a small baby).
  • Kidney transplants only last 12-15 years, so dialysis would have to be repeated and/or a new kidney found.
  • It’s possible the baby has very small, non-functioning (or low-functioning) kidneys that might even improve slightly upon being born, but they wouldn’t be enough to support the baby long-term, so some treatment would be necessary for that as well.

It’s a lot to think about.  Especially considering all of this hinges on the great big IF.  IF the baby can process oxygen and carbon dioxide.  Even if the baby can initially (I’ve read plenty of stories of babies that came out crying and died within an hour or two from lung failure), it doesn’t mean it is sufficient long-term, so some assistance might be necessary.  So IF the baby can survive the almost insurmountable odds stacked against it, then we can work on treating the kidney issue.  Then that is a long, hard road.

I took it all very calmly, more like a classroom lecture than a discussion about my baby.  I knew a lot of this stuff, and it was mostly educational, not decision-making as I was led to believe this meeting was going to be.  But then the doctor said, “It is important to remember that we don’t know why this happens.  We don’t understand why the kidneys don’t develop sometimes.  But it is critical for you to remember as parents that this is not your fault; this is not something you did or didn’t do, this isn’t about something you ate or didn’t eat.  We don’t know what causes it, and we don’t blame you and we don’t want you to blame yourselves.”

I burst into tears.  I’m pretty sure everyone in the room thought I was strange for only then crying, but I always seem to cry at the most inappropriate times.

I’ve been having a lot of feelings of self-blaming because I feel like if a problem occurred while the baby was growing in my body, then it must somehow be my fault.  I must’ve erred somehow and caused this.  It was my body’s responsibility to keep the baby safe and healthy and my body failed.  It’s a really hard thing to cope with: that the safe haven of the womb can sometimes not be perfect.  But for some reason it is harder for me to accept that it isn’t my fault.

Instead, I don’t have the C-section that I am just blindly supposed to accept as a great convenience to doctors and baby and my baby dies, then it will be my fault.  Even if the baby wouldn’t’ve survived anyway.

It’s hard to make a right decision when all the decisions seem wrong.

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