Finding peace with a heavy heart

I knew better than to go to an ultrasound alone.  Chris had a meeting that came up, but luckily my cousin works a few minutes away and so she joined me for my scan last week.  In my last post, I had said I was worried about growth and bowel.  Good news is growth and bowel are fine.  Baby is in the 57%, which is about 2lbs 4oz.  No issues with the bowel.

But we have a new set of issues.  As the sonographer was scanning, she got to a point where she was taking a measurement- I thought for some reason she was looking at the ureters (which had been dilated in the past)- so I asked her what she saw.  She told me she was measuring fluid. “Oh, I forgot about fluid! How is it?”  I asked.  Fluid wasn’t even on my radar as a potential problem.  It was low. 1.3cm total. I started crying.

I’m familiar with what fluid should be- I know at term it should be above 5cm and if its below, then we induce.  I had no idea what it would mean at 27 weeks.  We waited for the doctor who at least alleviated my first fear- I was worried we’d have to deliver.  I wasn’t ready!  First we had to figure out the cause.  Our best guess was that maybe I had been leaking fluid.  I didn’t think I had been- but who knows, maybe I was that midwife who didn’t even realize her water was broken.  So off to the hospital we went.

Once in triage we determined my water had not been broken.  My  midwife and the MFM (Maternal Fetal Medicine) doctor there went through other scenarios.  It could be uteroplacental insufficiency- they placenta is not working well, not feeding the baby.  But the baby was a normal size and they checked the blood flow from the placenta to the  baby, which was also normal.  It could be the kidneys.  Maybe I was dehydrated.  So the plan was to admit me, aggressively hydrate (IV, lots of water to drink), bedrest and re-examine in the morning.  Baby was looking fine on the monitor, so there was no immediate concern.  I got steriods to help with lung development in the event I had to deliver early.  The MFM doc talked to me about some potentially scary stuff- but I was convinced I could hydrate and things would be better. So far we had passed all the big landmarks- normal level II, normal fetal echo.  I was optimistic.

After 24 hours, and I think 7 liters of fluid later, my ultrasound showed essentially no change in fluid.  They took a closer look at the kidneys and they looked small- one was echogenic (sign of damage).  There was no urine in the bladder or the ureters.  The MFM doc confirmed my worst fears- the prognosis is poor.  We went on to meet with a neonatologist, a pediatric urologist and a pediatric nephrologist. After meeting with everyone, this is what we know now:

Kidneys

In utero, the baby’s kidneys aren’t working and they are atrophic (small).  The placenta is taking care of the kidneys’ usual function, so baby doesn’t need them now.  But s/he does after birth.  There might be some function- its just unknown until baby comes out and has to do it on his/her own.  This is an unusual presentation of kidney problems in a baby with Down Syndrome, but there is no other explanation, so they think the heart of the problem is chromosomal.

Lungs

A baby’s lungs need fluid to grow and expand.  Because there is such low fluid, the baby’s lungs will be small and may or may not function on their own.  We don’t know how long the fluid has been low- it happened sometime between 22 weeks and 27 weeks.  The earlier the low fluid, the poorer prognosis.   Low fluid at 27 weeks does not bode well, but it may have been low even earlier.

Fluid

Low fluid means baby has no cushion- s/he could very easily have a cord accident (push on the umbilical cord and cause stillbirth.  So the risk of losing this baby on the inside is high.  Also the fluid doesn’t allow the baby to move and stretch in the same way, which causes Potter’s Syndrome- some unusual features- limbs can be contracted (we already know there is clubbed feet), and there can be distinct facial features (low set ears, flattened nose, epicanthal folds around the eye).  Many of the features are also features of Down Syndrome, so I am unsure how that will play out.

Outcome

We’ve had some mixed messages through all this.  Every time I meet with someone in Obstetrics, we are given the worst possible prognosis.  Their impression is that this baby will not make it.  As someone in OB, I totally understand this perspective and I am devastated.  Every time we meet with someone in the pediatric field, they say there is no way to tell until the baby comes out.  I understand this perspective as well and I am the tiniest bit hopeful- but also scared of what further disabilities my bay could have.  My baby *might* live!  But will s/he need a vent for the rest of his/her life?  Dialysis? Kidney transplant? Seizures from low oxygen? What kind of life will my poor baby have? It’s so very very overwhelming.

Everyone agrees that the longer I stay pregnant, the better chance for lung and kidney growth.  Since there is nothing to do to improve this but wait, I don’t need to be in the hospital and I don’t need to be on bedrest.  For now we will do weekly testing- a heart rate check and a fluid check.  We will monitor the baby’s growth and look at the kidneys every few weeks. But the reality is, we might lose this baby.  If the baby can survive the pregnancy, we may lose him/her shortly after birth.  If the baby can survive that, s/he will be a very sick little baby.

I have taken a couple weeks off work to adjust to this diagnosis.  I feel like I’m living my worst nightmare for this pregnancy.  I opted for genetic testing early on so that I would know my risk of stillbirth. I thought of my patient who had a baby with known trisomy 18 (risk of stillbirth or death in the first week of life is somewhere around 99%).  I couldn’t imagine having to grow a baby that would likely die.  And that’s what I’m doing.  I feel like I could adjust more easily if I wasn’t faced with dealing with pregnant women everyday, harboring a secret about my poor sick baby, pretending to be joyful.  Its hard enough being visibly pregnant in the world in general under these circumstances, but to interact with 20-30 people everyday, who will likely comment on it and want to talk about it, just feels like torture.  People tell me not to worry about work, but I have to figure out a way to come to terms with it, because if I can’t work, I feel like I have no future.  This weighs on me too. That and the guilt I feel abandoning my colleagues at a very very busy time of year.

I am hopeful the new year will bring new perspective, new hope, new peace.  I will return to work in some fashion.  We will monitor this baby.  I will grow him/her as best I can.  For now, I am just working on finding some peace with such a heavy heart.

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5 thoughts on “Finding peace with a heavy heart

  1. I know exactly what you mean about putting on a mask for people around you about a pregnancy with a poor diagnosis… It is the hardest thing to want to be so excited about the baby, but to always have the cloud of potential loss hanging over your head when the pregnant women around you seem to never have thought an issue could occur with a pregnancy…

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