...and some that you probably didn't about PHPV (Persistent Hyperplastic Primary Vitreous). We are about to end a journey that we've been on for over four long years. Many of you have asked about Tate's eye condition, how we found out, how it affects him, etc... I don't mind at all when people ask about it. I wish I had started blogging or journaling about it from the beginning, but hey, hindsight is 20/20, right? No pun intended. Anyhow, I thought I'd give a little history on Tate's condition to catch us up to date, as we are meeting his surgeon tomorrow... the one who will be removing his eye.
When I was pregnant with Tate, we decided to sell our house and build a new one. Yes, I probably WAS crazy. We did things a little backwards, but it all worked out. We signed the contract on our new home, broke ground, and THEN we put the house up for sale by owner, stuck a sign in the front yard, and I had it under contract 26 days later. Too fast! We ended up in an apartment for three LONG months while they finished building our new home. So yeah, being in a temporary living arrangement isn't ideal when you're bringing a new baby home. Especially when it's already not under ideal circumstances.
I had Tate around 730am on a Monday morning after laboring all night. I was worn out and ready to get to our room in the mother/baby unit. I was happy to find a note from the pediatrician who had done rounds already, telling us that Tate was just perfect. So we enjoyed the day with our beautiful baby boy. Todd mentioned a couple of times that he wasn't opening his left eye much. I brushed it off with a "He was just born, give the kid a break." At around 1015 the following morning, we were called by a nurse to tell us that there was a problem with Tate's newborn eye exam, and that a doctor would be coming to speak with us, but to be ready to check out right away (a day early) and head to Baptist. The next couple of hours is a bit of a blur. I remember trying to joke around, saying "Hey, I have two little kids at home... I get another night here!".. but I quickly realized they weren't kidding. They did not get a red reflex in Tate's left eye during his exam, and I was told "It could be bad, or it could be worse." We were discharged by noon, and headed to Baptist Hospital to see Dr W (our Pediatric Opthalmologist) to find out what was wrong with our son's eye. I'll never forget how tiny he looked on that big hospital bed. I'll also never forget when Dr W told us that Tate was blind in his left eye, and he would not regain vision. They did an ultrasound on his eye, and confirmed PHPV. I don't really remember much else from that appointment, other than looking at my tiny day-old baby on that big bed, and crying my eyes out with my husband. Oh, I do remember one more thing... I remember when our PO told us not to worry, there is no surgery necessary right away... "We can wait a week or two," he said.
By the time we left Baptist, we couldn't remember the name or initials of Tate's condition. We had a checkup with the pediatrician the following day, and thankfully, the pediatrician called Dr W and asked for the name of the condition, and general information. The pediatrician had never heard of it, so she asked our PO how often he sees it, to which he replied "About once a decade." I knew that if I couldn't control what had happened to our son, I could at least arm myself with information. Google, here I come.
So here it is. When an eye is developing when the child is in the womb, temporary blood vessels develop to form all the parts of the eye, then the become clear and dissolve, becoming the vitreous. PHPV develops when the temporary blood vessels don't dissolve, therefore don't become clear, and that hazy vitreous blocks the light passing to the retina in the back of the eye. Most kids have anterior OR posterior PHPV. Tate has both. This stalk of scar tissue also detached his retina leaving him blind in his left eye. The retina was encased in scar tissue, eliminating the option to reattach it during his first surgery. He also had a cataract. There are no normal structures in Tate's PHPV eye. As Tate's mother, one of my primary concerns was, "What did I do wrong? Did I forget my prenatal vitamin one too many times? What did I do to cause this to happen to my sweet boy?"... the answer - nothing. The PO assured me that it's a complete fluke, and there is nothing I could have done to prevent it.
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