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Parent Support for Retinopathy of Prematurity

Meet Tonia, Preemie Parent Mentor

My preemie(s) was born at: 24 weeks
Days spent in the NICU: 99
Current age of preemie(s): 20 months
Parent of Multiples: Yes
Our NICU Journey included: Multiples birth, Twin loss, PDA ligation,Reintubation, ROP.

When we first checked in to the NICU and met with the counselor, she told us that this journey was like the least fun roller coaster ride of your life, with lots of up and lots of downs. And she was absolutely right. Support is so important – I did not attend group meetings because I wanted to be by daughter’s side as much as I could. But I would have been grateful to have an email partner or online resource that I could have reached out to from my home or the NICU. My goal as a Graham’s Foundation Parent Resource volunteer is to be that partner for preemie parents dealing with a diagnosis of Retinopathy of Prematurity (ROP). ROP can be an extremely emotional diagnosis as it usually occurs close to the end of your NICU stay when you think you’ve finally gotten past all those downs.

There may be more dips on the horizon but you are strong enough to handle them. I want to help moms and dads understand that they know their preemies better than anyone. You can see how your baby responds to different nurses and staff, and ask for a change. Build a relationship with the staff so you advocate for what’s in the best interests of your preemie. Remember, your baby will have his or her own schedule and sometimes one step forward will be followed by two steps back. That doesn’t mean progress isn’t being made.

Retinopathy of Prematurity (ROP)

Retinopathy of Prematurity is common in premature babies, who often receive treatment with oxygen and may have either an excess of oxygen or too little oxygen in their blood. This results in the abnormal growth of blood vessels in the retina, which can lead to vision problems or blindness. Some cases of ROP correct themselves while others require surgery, and the variability of ROP can be frightening and frustrating for parents.