Wednesday, November 6, 2013

PAM FOD #6 - Preemie complications: Retinopathy of Prematurity

Prematurity Awareness Month
Fact of the Day
Day 6

Q: How does prematurity impact one's eyes? (Part 2)
A: The world outside the womb is not ideal for eye growth. Inside the womb blood oxygen levels and blood pressure are more or less naturally kept at a good spot for the growth of the blood vessels in the eye. Outside the womb, other factors, including too much oxygen in one's blood cause the vessels to grow incorrectly out from the retina, leading to extra pulling on the retina and possible detachment of that thin but crucial film on the back of the eye. This, in turn, can lead to blindness.  (Retinopathy of Prematurity, likely from too much oxygen after birth, is what caused famous musician Stevie Wonder to go blind.)

Some factors that can lead to incorrect vessel growth in premature babies:

  • Breathing issues - apnea, low or high blood oxygen levels, high carbon dioxide levels in the blood ("poor blood gasses")
  • Heart issues - anything that makes blood flow inefficient or too slow.
  • Transfusions - as I understand it this is because they create more blood pressure in a relatively short amount of time
Unfortunately, for a preterm baby, many of these are unavoidable. I stopped counting how many blood transfusions JAM had gotten after it reached half a dozen. He had heart issues. He had breathing issues. When you're born that early, your body isn't ready for all this baby stuff. The eyes took the fall.

Despite doctors efforts to control how much oxygen was in his blood and monitor blood gasses (the CO2 output or "good exhale" as seen by what remained in his blood), JAM developed retinopathy of prematurity.

There are five levels. You can read about them here. Level one is best, level five is blind (total retinal detachment).  If you hit level three, they will probably recommend laser eye surgery to stop you from getting to level four or five. The surgery zaps protein in the eye in the sections farthest from the retina to help the vessels grow into the outer section of the eye. Gnarly, thick vessels that don't grow into the full eye are cause for concern.

JAM not only got to stage three (in both eyes) - he got there alarmingly fast.  They give that a special name. It's something lovely that they call "Aggressive posterior ROP" or "Rush Disease," and best as I can tell, it's like Plus Disease (which is bad ROP), but a bit worse.

Do you like pictures?  Apparently they made one of JAM's primary NICU nurses a bit queasy, so I won't post any of his here, but you can find blood vessel pictures for ROP + and Rush Disease here.

In normal ROP that has gotten to stage three, laser therapy prevents blindness in 80 percent of patients.  For people like Jonathan, it works only about 65 percent of the time.

Thankfully, for Jonathan it worked, and his ROP slowly regressed until now he is not considered an ROP patient any more, but a CROP (or "has scarring from ROP") patient.

The surgery potentially saves the central vision, but at the expense of the periphery vision. Sorry, Jonathan will never be a hockey player. 

Often, for whatever reason, babies born severely premature also develop nearsightedness. In our case JAM looked good for the first nine months, and then at his appointment at just over a year tested severely nearsighted.  The doctor thinks it's because of all the scarring and abnormal development in our son's eyes. 

"He has A LOT of scars in here!" the doctor said at our last eye appointment, "a LOT."

But you know what?  That's the great thing. A year ago we were mentally preparing for a baby who would go blind. Prior to laser surgery, he would have gone blind.  We'll take the scarring. And a pair of glasses with that, too, if we can.

Yes, my mom totally made this the "FOD" so
that she could post this cute picture of me.
Today he got his first pair of glasses.  So as of about 11 am, the world began gushing over a really really cute baby in his brand new glasses. Jonathan is steadily getting used to being able to see more than two feet in front of himself. It wasn't love at first sight - it took him a bit of time to get used to the glasses. He celebrated by falling asleep ten minutes after we put them on. The visual stimulation was too much.

Sometimes it catches me off guard when he looks into my soul, connects, and smiles. "I didn't think you'd be able to do that, little buddy!"  And now he can do that from across the room.

Yet again science at work, saving babies. Thanks, scientists and doctors everywhere!

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