19 April 2012

Butterfly Baby

'I want you to do the wound care for a two-day-old baby I just diagnosed with Eaosivaljvlkajsviwjv Bkcvalkjvalwkj.'

'I'm sorry . . . with what??'

'Eaosivaljvlkajsviwjv Bkcvalkjvalwkj' our visiting pediatrician repeated himself.

'Sure, okay, I guess . . . but you're going to have to write that down for me!'

Epidermolysis Bullosa, Dowling-Meara Type.

It's a rare genetic abnormality.  VERY rare, in fact.  And baby's skin is literally blistering and sloughing off wherever he is touched. 

According to a website committed to research of the disease,
Epidermolysis Bullosa (EB) is a genetic condition where the skin breaks at the slightest touch, causing painful, open blisters and wounds. EB can mean a life of extreme pain, disability and, at its worst it is fatal in infancy.
Basically, the epidermis (top layer of the skin) separates from the dermis (the deeper layer) due to a protein (keratin) malfunction.  And if we're not careful, baby's going to end up looking like a little raw tomato . . . but even worse than how he'll look is how he will feel.  Raw nerve endings will leave this helpless one in agonizing pain.

Specialists of EB call babies like my little guy butterfly children because their skin is 'as fragile as butterfly wings.'  Shame.

On day two of his life, our very own Butterfly-Baby came with some blistering on both his legs.  Day three some pin-head-size spots on his cheeks started forming.  Today, his fourth-day anniversary, mom showed us the small blisters forming on his gums and tongue.  When I took his bandages down from his legs, he was red and raw from the nail beds to mid-thigh on both legs.  And despite pain meds that made him sleep, he still wiggled and writhed from the pain.

Dr. Orlando asked me to see this kiddo because of my experience with burn-care and dressing changes.  But being an OT, there is so much more I'm interested in.

For starters, this is a really fascinating case (on a scientific level) . . . and I've learned so much reading up on it.

But more than that . . . as an OCCUPATIONAL Therapist, our Butterfly-Baby has really peaked my interest.  I mean, what are the OCCUPATIONS of a four-DAY-old kiddo?  Feeding, sleeping, crying, pooping, bonding with mommy, and thriving.

Goal number one: KEEP BABY ALIVE!  The biggest (and most obvious) challenge to this is infection control.  But so is thriving.  Not only does Baby need enough calories to keep growing, he needs extra for his wounds to heal.

Now that our little Butterfly has wounds in his mouth, Dr. Orlando and I have begun discussing what our options are should he stop accepting milk from mama's breast . . . or if he's not getting a high enough caloric intake.  I suggested trying to make our own Haberman Feeder and a goat-milk-based breastmilk-substitue. . . but I don't think Dr. O's been in Galmi long enough to jump on my locally-available bandwagon . . . eh, give him a few more days, he'll come around.

Please pray for our sweet Butterfly . . . he's starting life with unmeasurable disadvantages:

  • He was born in one of the poorest countries on the face of the earth
  • His skin is literally blistering when he is touched
  • He's fighting infection in an already filthy place
  • His 'interdisciplinary team' consists of a highly skilled Pediatrician and a rodeo clown . . . I mean, Occupational Therapist.
  • Because of his age, we can't give him most of the 'formula' options that might (on the best of days) be available
  • He's in a lot of pain . . . always . . . which increases even when his mama tries to comfort and console him
But if there's one thing I've learned in my first 15 months living in Galmi . . . this is a place where miracles happen!


Sarah Fountain said...

I'm surprised that the pediatrician is not big on the goat's milk.  I've heard so many positive stories from those who are trying to find goat's milk for their children, even in the privileged US!

Deb. said...

The issue for us is refrigeration . . . but I think if we do it, I'm going to make some up (it's a concoction of goat's milk, sugar, peanut oil and filtered/boiled water) and bring enough each day . . . maybe twice a day, that we can keep in the pharmacy fridge.

Bobnrobn said...

Should I add formula to the boxes for the container????  and if yes, what kind do I buy???? We are going to Sebring on 5/1 so if you tell me yes, I can at least pack some......xoxoxoxo

Shal said...

We will be praying! Is there anything else we can do? Is there a container going that I can mail supplies to??? Let me know!

Michael Chaney said...

Hey Deb,
You bring me joy, even thousands of miles away.  I admire your optimism and joyful spirit in the darkest of circumstances.  I am encouraged by your love and faithfulness in tackling the toughest challenges, even in the midst of hot season.  I remember after my first, and only, day in the OR, you invited me to come play with bubbles with a few little ones, one or two amputees.  You have been given an incredible love for all of those around you, not just sick and hurting but the scared like me.  I am still praying for you and all the rest.  I cannot believe it has been almost a year since I came to Galmi.  I am sure the time will fly till I return.  I'll be praying for your butterfly :)
-***Michael Chaney

Deb. said...

Quick update for those of you asking about sending formula . . . Dr. Orlando took the (obvious) steps and ASKED if we have any.  Turns out OB keeps a stash in the pharmacy for newborns just-in-case.  So, as of now, no, we don't need any . . . and the lesson learned: before jumping in and recreating the wheel in a very complicated and outrageous way (which is, of course, typical Deb. fashion), make sure the wheel isn't hidden in the pharmacy!