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I Can See Clearly Now: Retinopathy of Prematurity (ROP)

ROP_preemiesI remember standing by my micropreemie’s isolette, describing everything I saw out the window: the blue sky, the trees, the sunshine. I wanted my son to know what it was like outside the walls of the NICU, but I didn’t know if he would ever be able to see these things for himself. Jaxson had just been diagnosed with severe and aggressive Retinopathy of Prematurity (ROP) and the disease was threatening to take his eyesight.

Jaxson was referred to a Retinopathy of Prematurity (ROP) specialist. The doctor was kind, informative, and very skilled at her job. We trusted her and we knew she would help us make the right decisions to save Jaxson’s eyesight. However, I had a hard time finding information online about ROP that I could understand, especially when I was nervous and stressed out about the diagnosis.

Here’s what I learned…

What is Retinopathy of Prematurity (ROP)?

The retina is the lining of the back of the eye, where images are formed and sent to the brain. Retinopathy of Prematurity (ROP) happens when the retina’s blood vessels grow abnormally. The smaller a baby is at birth, the more likely that baby is to develop ROP, although there are many factors that determine if a baby will develop ROP. (Source)

How serious the ROP is depends on what part of the eye is affected (the zone); how far the disease has progressed (the stage); and whether the blood vessels are enlarged and twisted (plus disease). (Source)

Zones of the Eye

  • Zone 1 — near the center of the retina; core vision
  • Zone 2 — the middle of the retina
  • Zone 3 — the outer portions of the retina; peripheral vision

Stages of ROP

Source: www.geteyesmart.org

Source: www.geteyesmart.org

  • Stage I — Mildly abnormal blood vessels. Usually requires no treatment.
  • Stage II — Moderately abnormal blood vessels. Usually requires no treatment
  • Stage III — Severely abnormal blood vessels. The blood vessels grow toward the center of the eye instead of following their normal growth pattern along the surface of the retina. Treatment is usually necessary and has a good chance of preventing retinal detachment.
  • Stage IV — Partially detached retina. Scar tissue from the abnormal vessels pulls the retina away from the wall of the eye. Treatment is necessary.
  • Stage V — Completely detached retina. Treatment is necessary.

“Plus Disease” means that the blood vessels of the retina have become enlarged and twisted, indicating a worsening of the disease. When Plus Disease is present (any zone or stage), treatment is usually necessary. (Source) Pre-Plus Disease means that the eyes are showing warning signs of developing Plus Disease.

Frequent eye exams are necessary to monitor for progression of the disease.

What Are the Treatment Options for Retinopathy of Prematurity (ROP)?

My son’s disease was severe and aggressive and it was effecting his core vision (Zone 1, Stage III, with Plus Disease). Our ophthalmologist recommended the new-at-the-time treatment of injecting a drug called Avastin into Jax’s eyes. Avastin is often used with cancer patients, but the drug works differently than chemotherapy. Avastin is a tumor-starving (anti-angiogenic) therapy that prevents the growth of blood vessels.

The drug would target and destroy the enlarged and twisted vessels (the Plus Disease) and allow healthy blood vessels to grow.

The Avastin injections were administered bedside in the NICU. The procedure took one minute! While the procedure itself was quick, the process was stressful for me and my baby. After the procedure, I immediately did Kangaroo Care with my son to help comfort him.

The injections cured my son’s Plus Disease. Jaxson showed positive progress immediately when the healthy blood vessels reached Zone 2 of his eye, but then the vessels stopped growing. Our doctor warned us that laser surgery was still a possibility.

Laser therapy “burns away” the periphery of the retina. Another less commonly used treatment option is cryotherapy, where the periphery of the retina is frozen. Both treatments are considered invasive surgeries on the eye. (Source) These treatments can slow or reverse the abnormal growth of blood vessels. Unfortunately, the treatments also destroy some side vision. Treatment is done to save the most important part of our sight— – the sharp, central vision we need for “straight ahead” activities like reading and driving.

In the later stages of ROP, other treatment options include:

  • Scleral buckle. This involves placing a silicone band around the eye and tightening it. This prevents pulling on the scar tissue and allows the retina to flatten back down onto the wall of the eye. Sclera buckles are usually performed on infants with stage IV or V ROP.
  • Vitrectomy. Vitrectomy involves removing the the gel-like substance of the eye called the vitreous and replacing it with a saline solution. After the vitreous has been removed, the scar tissue on the retina can be peeled back or cut away, allowing the retina to relax and lay back down against the eye wall. Vitrectomy is performed only at stage V.

Jaxson’s eyes were carefully monitored for any changes. He got weekly eye exams until he was released from the NICU and they continued after we got home. When my son was 6 months old actual (2 months adjusted), the disease began progressing. The blood vessels in his retina began bleeding and showing signs (again) of Plus Disease. It was time for laser surgery. We were more comfortable with laser surgery at this point because the Avastin injections had cured the disease in Zone 1; he would only need laser surgery in Zones 2 and 3. The laser surgery took approximately 30 minutes and was performed under general anesthesia. Jaxson’s eyes were slightly puffy and red after surgery, but he did not seem bothered by it at all. After the surgery, Jax had monthly follow-ups with his ROP specialist.

Can ROP Cause Other Eye Problems?

Infants with ROP have a higher risk for developing eye problems later in life, such as retinal detachment, myopia (nearsightedness), strabismus (crossed eyes), amblyopia (lazy eye), and glaucoma. In many cases, these eye problems can be treated or controlled. (Source)

My preemie was discharged from his ROP specialist and referred to a pediatric ophthalmologist for continuing care when he was 1 year old actual. We see the pediatric ophthalmologist every 6 months. Jaxson is 2 1/2 years old now and has just begun showing signs of “lazy eye” which could be a lasting effect from the ROP, the injections, or the laser surgery.

Was your preemie diagnosed with Retinopathy of Prematurity (ROP)? What treatments, if any, did your preemie receive? Has your preemie experienced any lasting effects from ROP?

I hope this information helps if your preemie is facing a diagnosis of ROP. I have linked to sources within this post and have provided first-hand information about our experience. This article is not a substitute for medical information. Please talk with your pediatric ophthalmologist for information specific to your preemie.

Andrea Mullenmeister About Andrea Mullenmeister

Andrea Mullenmeister (MN) is a stay-at-home-mom for a little adventurer. Jaxson decided to meet the family while they were on vacation! After a terrifying helicopter ride, Jax was born at 23 weeks 3 days weighing 1lb 8oz. He suffered from severe ROP, humongous inguinal hernias, Bronchopulmonary Dysplasia and severe hyspospadias. After 93 days in the NICU, Jax came home. He is a happy and mostly healthy toddler with only minor issues. Andrea volunteers on a parent advisory council for "Jax's" NICU and shares their story to give other parents hope. She writes about the life of her micropreemie at An Early Start. You can also follow her on Facebook, Twitter, and Pinterest.

Comments

  1. Thanks for this informative article. I had stage IV ROP and was treated with I believe it was cryotherapy. I unfortunately lost what little sight I had due to complications, such as retinal detachments and cataracts.

    • Astrid, I’m sorry the complications caused you to lose your sight. I’m so glad that you are willing to share your story – it’s very rare to find adult preemies who talk so openly about the lasting effects of prematurity. Thank you!

  2. This is very helpful! My 26-weeker had laser therapy (Stage III, I think) more than six years ago–she’s been wearing glasses since she was 13 months old, and we patched for amblyopia for over a year. I’m so thankful for the vision that she does have!

    • Melissa, I am happy to hear that your daughter has the gift of sight! We have an appointment with the ophthalmologist on Thursday where he will check for worsening of Jax’s amblyopia. What was patching like? How did you get a toddler to keep the patch on?! I’m not sure what will come out of the appointment, but I’d like to get as much information as possible from other parents who have “been there!”

  3. I too had trouble finding “readable” information on ROP. This is a good summary. I am sure it will be helpful to many!

    My 26-weeker had Stage III in both eyes and had laser surgery. She is now 4.5 years old, wears glasses (near-sighted) and is being patched for lazy eye. We see the eye doctor every 6 months or so. (Only doc we still see from the NICU)

    • Lori – I’m glad you found the information useful – I hope it does help other families. How exciting that the only specialist you see now post-NICU is the eye doctor! Thank you for sharing your story.

  4. Wow what a journey! My now 6 year old 27 weeker had zone 2 stage 3 and had laser surgery- the injections were not an option then. He was diagnosed with near sightedness at age 1 and has had glasses since. It seems in a lot of families from the Nicu I talk to the injections are working a lot of the time which is amazing! My son took another week to come off the vent after that surgery so it was a big setback for him in the Nicu

    • Tricia – thank you for sharing your story! The injections were brand new when my son got them, so that part was a little nerve-wracking! But I’m so glad we decided to give it a try. They allowed us to wait until Jax was bigger for the surgery, so I think that helped him recovery quicker.

  5. hey i have a 7month old baby girl and she was born at 24weeks 700grams i stayed in hospital for 3 months inorder for her to gain weight during that time i had never thought of any disease as ROP since she is my first child my work was to observe on her weight for us to go home after the gain weight of 1.8 kgs so when we were discharged she was already 3 months old thats when i noticed that my baby is not following objects and I had to take her for an eye check up where I was told its a sign of ROP and I never knew what was that coz I had never heard of it and we were told to come after a 3 months by then my baby was 6 months when we went back the doctors told me that the ROP was on stage 4b and there is nothing that could be done so I wasn’t contented with the news I had to go the another hospital which they told me the same news am in pain knowing that my baby will never see me or see the world please help me out I want the best for her I love her so much I want her to have a normal life like other kids.

  6. My son was born at 24 weeks. He developed ROP and had the cryotherapy. (They froze the blood vessels) Since the surgery at 3 months he has been legally blind. His vision use to measure 2400 in his good eye and was immeasurable in his bad eye. We took him to Arizona Stem Cell center and he received his own stem cells through a nasal spray. After this, his vision measured 2200 in his good eye and 2400 in his bad eye. He is still legally blind but it did help. We got approved to go to China to get stem cell treatment done there, which is totally different than what you can get here in the USA. We couldn’t raise the money to go and that’s why we settled on the treatment in Arizona. We still hope to take him to China someday though but in the mean time we are happy with the improvement we seen from the treatment he got in Arizona. I have been researching again to see if there’s any new treatment that could help and I came across Visoluten which claims to help retinas. Has anybody here heard of this or know anything about it? We also saved our daughters cord blood in hopes of being able to use those stem cells for our son someday. Something to think about if you can afford it and plan on have more kids in the future.

  7. My baby born in 35 weeks and weight is 1800 gms. Baby admitted in nicu for 11 days. In 1 month we checked for rop. Doctors told that Then my baby suffers from rop stage 1 in zone 2 loke fevr also. They observed for 1 month. After 1 month my baby went to stage 3 in zone 2. Two lasers done. Is it cure with lasers r not.. any problem is there for my baby.. my mail id is srirajani99@gmail.com. plz give me suggestion to cure my baby with ur blessings

  8. Thank you so much..

Trackbacks

  1. […] Read the article: I Can See Clearly Now: Retinopathy of Prematurity (ROP) […]

  2. […] were checking for Retinopathy of Prematurity (ROP). This link gives a really good explanation of what ROP […]

  3. […] Their blood vessels were growing appropriately, meaning they were not really at risk for retinopathy of prematurity, or ROP. […]

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