Congenital Diaphragmatic Hernia – an update on Lucy

Congenital Diaphragmatic Hernia – an update on Lucy July 24, 2015

In December, I asked for prayers for my friend Kara’s daughter, Lucy, who had been born with a Congenital Diaphragmatic Hernia (a hole in her diapragm.) We were overwhelmed by the prayers, Masses, and kind notes of support from people all over the world. Here’s a guest post from my BFF, Kara, with a Lucy update and a little more information about this all too common birth defect.

I find myself offering encouragement and hope to expectant parents of CDH babies as often as I can.  Especially after a week like the CDH community has had.  Three babies, that I know of, have died as a result of those three letters.  It’s almost funny how much three letters can change your life.  I’ve been where they are.  I remember (it’s been almost a year at this point) laying on the bed facing the black and white screen, watching our sweet little girl wiggle and kick, silently crying because we had just been  handed the scariest news we’ve ever heard.  “I’m so sorry.  I wish there was something more I could say.  Your baby does have CDH.  Her heart is pushed all the way to the right because her stomach is in her chest cavity.” CDH.  Congenital Diaphragmatic Hernia.  There was talk swirling around my head of surgeons, statistics, hospital stays, nurse coordinators, ECMO,  NICU, stomach position, heart position, liver position, lung/head ratios.  Silent tears and shaking were about all I could muster.  We had done some research on CDH before that appointment, because a previous ultrasound showed it was a possibility, but it was unclear at that time.

Sometimes clarity sucks.

CDH is a birth defect as common as Cystic Fibrosis or Spina Bifida.  It occurs in 1 out of every 2500 births each year.  The diaphragm fails to form or close totally, during the first trimester of pregnancy, and the opening allows abdominal organs into the chest cavity, inhibiting lung development  and causing a cascade of complications.  The chances of survival are 50%.  There is no real way to predict what baby will make it, and what baby will not, before birth.  Heck, not even after birth.  You are not “officially” a “survivor” until you’ve been discharged from the hospital, sometimes 100 + days after birth.  There is no known cause.  None.  Folic acid won’t help.  There doesn’t yet seem to be a “marker” gene to find and be wary of.   Just “surprise!  Your baby is really sick and it’s up to the toss of a coin to determine if she’ll come home with you, or not.”

From there on out we had weekly ultrasounds, checking on her position, her “practice breathing” and organ positions.  We knew that liver position was an indicator of survivability, so we prayed, hard, that her liver would stay down.  One ultrasound, as we grasped at good news, we did a little mini-celebration that her liver was still down.  I said something to the effect of “hey!  Maybe her stomach will decide to get it’s act together and move on down as well.”

Our perinatologist just solemnly shook her head.  “No, organs don’t go down.  There is a bit of a vacuum that occurs in her chest, so that over time more and more gets sucked up, but things don’t go in reverse.”  We were at about 32 weeks.  Six more weeks to go, praying that organs stayed down.  Every movement she made worried me, every time she hiccupped I prayed her diaphragm would maintain whatever integrity it had and not betray us anymore.

It was stressful.

There was another ultrasound that revealed that her intestines had started their creeping up into her chest cavity.  The good news from that day was that they could make out some lung tissue.  We were cautioned that  meant nothing, I was just thrilled she wouldn’t be starting from nothing.  It’s the little things.

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