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ROP Question

snoopymom09snoopymom09
in Preemies

Hi ladies,

My son was diagnosed with Zone 2, Stage 3 ROP with Plus disease last week.  Our eye doctor has given us two recommendations for treatment.  The first is laser surgery.  This requires him to be put under and put back on the vent.  They hope to extubate him again within 24 hours but it depends on how he is doing.   The second option is Avastin.  Treatment of ROP using Avastin is in a trial stage at this point, and is not yet FDA approved.  This procedure is much easier on the baby than the laser surgery and is relatively painless.  However, we do not know the long-term risks (if any) associated with the use of Avastin for this purpose. 

DS is currently 10 weeks, 5 days old (36 weeks, 4 days gestational age) and he weighs about 4lbs 4oz. 

 I was wondering if anyone else has had to deal with ROP and if there were any suggestions.  My biggest fear with the laser surgery is putting him back on the vent and that he won't come back off of it.

 TIA!

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Re: ROP Question

  • CLAYLIOVERCLAYLIOVER
    Adalynn had Zone 2 Stage 3 as well. We opted for laser treatment. She was not put under for it though. I did meet one family that did the injections though. Her eyes are perfect now. I will be more than happy to help you answer specific questions about the laser surgery if you would like :) GL
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  • adrielegorburuadrielegorburu member
    My DD is stage 2 zone 2 right now with some progression from two weeks ago (Stage 1 zone 2) - no plus disease now.  She isnt requiring treatment at the moment but the eye doctor spent a long time discussing both treatments with us in case she does need it.  He was very vague about risks associated with the Avastin treatment and it seemed like he preferred laser treatment.  He said it was "tried and true" but he wanted us to know all of our options and make an informed decision.  Although he didnt outright steer us away from avastin he did make sure to tell us that it is normally a chemotherapy drug which means it is caustic to the system and although less invasive than the laser surgery he would take the risks of a vent over toxicity anyday.  (my DD has had some tummy trouble) He pointed out 4 babies in DD's NICU unit who had already had laser surgery to correct ROP and said they all had improvement of their disease.  We asked if any of the babies had been treated with Avastin and he said no. 
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  • njdcgirlnjdcgirl member

    Sorry your son's ROP is progressing.  My son also had Stage 3 with plus...we did the laser surgery.  The Avastin wasn't given as an option, so I have to admit that I don't know much about it.  However, I think I'd go with the more "known" treatment (I'm not much of a risk taker.)  Andrew had the surgery at about 36 weeks, and he did great coming right back off the vent afterwards immediately.  We were happy about that obviously, as I had the same worry as you did (he was vented for about 5 weeks after birth and was on the high flow nasal cannula before the surgery).

    Anyway, the surgery was successful, and the progression stopped.  He's doing great now (11 months actual, 7 months adjusted) and recently had his 6 month follow up.  Besides some nearsightedness - no glassess needed yet - there's no other issues.

    Good luck with your decision - and which ever you choose I hope it is successful!!

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  • irishdoirishdo

    My son had also had Stage 3 Zone 2 with plus disease.  He just so happened to have an eye exam right as the plus disease was starting.  We also were not given the choice of Avastin back in Oct. He did have to be reintubated and it took him a little over a day to get off the vent mainly because he was snowed from all the Fentenyl they gave him for sedation.  He extubated a little dramatically when he coughed his tube out of place so went to CPAP but then weaned quickly and actually was off all oxygen within a week of the surgery (he was on high flow prior to the surgery).  He has been cleared from an ROP standpoint and now just needs follow up for acuity due to being a preemie.  The surgery itself for us was done in the NICU in a procedure room they had set up and only took about 15 min an eye.

    Good Luck with your decision

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