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Readers Respond: Did Your Preemie Have ROP?

Responses: 15

By

Updated May 28, 2014

Retinopathy of prematurity, also called ROP, is a disease that affects the retina of the eye. Did your preemie suffer from ROP? Was it severe enough to require treatment? Sharing your stories with other parents who are coping with ROP can help them know what to expect.

stage 4

My son, a 28weeker, has developed stage 4. Doctors did vitrectomy on her left eye and laser surgery and lucentis injection in both eyes. Now the doctor decided for another injection. I don't know whether lucentis or avastin? Pls help..
—Guest ap

ROP

My daughters were born at 23 weeks 5 days. Her sister unfortunately didn't survive. They were 1 lb 5 and 1 lb 2 at birth. The surviving twin she had stage 3 ROP and they did the injections which put her back at stage 1 and she is now up for laser surgery. How was your preemie after the procedure? Because I found after the injections she was really hard to settle and was terribly upset (who wouldn't be).
—Guest Ashley

ROP

I'm now 56 yrs old, was born at 24 months. I lost one eye 18 years ago, infections in that eye. Now my retina is as thin as tissue paper, scar tissue has sacring maclular degeration behind the eye. The pain is awful. I can't take drugs for the pain, because I'm a addict trying to recover. And the only eye I have left has minimal sight. I'm losing this eye, the Doctors I've seen don't give me much hope.
—maryanton

Xavier the brave

Twins born @ 25+4 in 2010. The doc was amazing . When Xavier was 12 wks he had a routine eye check & in a matter of days was flown to specialist to have laser surgery for Stage 3+ ROP. He is 2.5yrs and is doing wonderfully, both he & his brother. Forever grateful to the doctors and nurses.
—Guest Mama to preemie twins

ROP child

I am an adult that has ROP. I have lived life as normal as possible, but there are times that it has been a challenge. Currently I am a graduate student and am a blessed person to have had ROP, because I can relate to my clients on a simular level.
—Guest sue

24 weeks

I had my daughter at 24 weeks and she weighed 1 lb 12 ozs. In 1999. She has been through so much. I am lucky to have her. She had ROP and is totally blind. I have so many medical issues with her. I don't know what the doctor was doing. I definitely don't think they did enough to help her. But one thing I know is I love her with all my heart. I have four other children. Thanks for letting me share my story.
—Guest Kathy

My Granddaughter has ROP

My granddaughter was born at 27 weeks (2 lbs 5 oz). She is fine except now she has developed ROP. She will have surgery tomorrow. What should her parents look out for.
—Guest GeeMa

retrolental fibroplasia in preemies

I was a twin preemie born in 1954. I am trying to find out who the Dr was that experimented with me in NY and saved my vision.
—Guest laura meisner

ROP stage 3- 24 weeker

My daughter was born at 24 weeks of gestation. We passed her first eye exam but not the second. It was bad enough that they were already sure she would need treatment. Two weeks later she received an injection of Avastin in both eye. She has improved a lot since. She is now 10 weeks after her due date and she is still improving slowly. Her eye are not fully vascularized but it is still getting better every exam. She is still beeing seen regularly since there is still a chance of regression.
—Guest K Aube

ROP

My twins are 18 and my one daughter has ROP. They were born in '93, should they have checked my daughters and treated her? I read an article yesterday, this girl was bornin '89, and they treated her and she is fine. It's been a struggle but my daughter is remarkable, NHS honor roll. Is there anything they can do for her now or is it too late? Her retina became detached in April when she was to go to Disney for band, the doc didn't put air in her eyes, she was allowed to fly, but wasn't allowed to ride rides. Needless to say she did not have fun. I asked the doc why they couldn't fix her retina from becoming detached, and he said why fix when it's not broke. It was very scary not knowing if it was caught in time. Please answer.
—Guest margie

ROP

3 ROP SESSIONS DONE, APPEARS NORMAL. DOCTOR SAYS ITS GROWTH IS NORMAL BUT STILL CALLING FOR MORE SESSIONS . THIS TIME KID WILL BE GIVEN INJ TO MAKE HIM UNCONSCIOUS.
—Guest JAGANNATH

ROP

My grandson has Rop he weighed 1 lb 3 oz when he was born tomorrow he will be 4 months old he now weighs 5 lb 6 oz and is healthy except for the Rop and they wont let him come home because of it. If someone could explain this it would be greatly appriciated.
—Guest tammy

My Daughter and ROP

Kaitlyn and her twin brother Grayson were born at 25.6 weeks. At 3 weeks Kailtyn was diagnosed with ROP Stage III and the prognosis was grim. However, thanks to the wonderful doctors at Retina Consultants at UAB in Birmingham, AL today Kaitlyn is a thriving 3 year old and only has to wear glasses. Her vision improves every time we visit the opthamologist and even her doctors are amazed at her progress. Dr Albert injected Kaitlyn's eyes with a cancer drug calles Astivan and the results have been nothing short of miraculous.
—Guest mbhurter

My Kids

I am a specialist teacher who has worked with children with ROP. At one time I had a class of preschool age children all born preemie with varying degrees of ROP and varying accompanying disabilities. One thing parents should know is that although other disabilities MAY accompany ROP it is not always the case. My nephew had mild CP on his right side. One doctore sa8id he would never walk, talk or sit up. At age 4 he was clicking the mouse on a computer with his left hand which was not effected by the CP. Now at age 14 his reading level is at college level.
—Guest Ms. Kathy

Clayre's ROP Story!

She was born at 28 weeks and was 2 lbs 14 oz. She was doing better with everyday that passed. She passed her first eye exm but failed her second! We had the ROP surgery when she was a little over 1 month old! In the NICU the surgery was about an hour long and she went through it fine but no matter what anyone told me I still worried! But now she is 10 months old and she has good vision we found out last week that she won't need the lazy eye surgery(which is common in preemies). So that very good to hear but Clayre smiles when she sees someone and you call her name! If the NICU nurses and Doctors wouldn't have found the ROP she could have lost her vision all together! I am very blessed to have this little miracle in my life!
—Guest Bonnie Resetar

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