Coping With Retinopathy of Prematurity

My daughter was born at 24 weeks gestation weighing 730 grams. At 1 day old she had laser surgery on her left eye to some retina, her right eye retina was completely detached and nothing could be done. She was in a neo-natal unit for 5 months due to other complications associated with her prematurity. Her start to life was very sad. She also has a condition called Portal Vein Hypertension which became obvious when she was 20 months old. I was under the impression nothing more could be done for her blindness and have prepared her with the help of Vision Australia and Guide Dogs Australia to be educated in Braille and use a cane and possibly a guide dog later for mobility.

We have spent 3 years in and out of the hospital due to her Portal Vein Hypertension and she has had massive bleeds on 4 occasions. She has presented moribund to the hospital at least twice during those years and only by the grace of God (and her wonderful Gastroenterologist and surgeon) has she survived. The last haemorraghe [hemorrhage] was almost 2 years ago and resulted in her spleen infarcting and having to be removed. Because of the removal of her spleen she is now more susceptible to infection and is on antibiotics daily to protect her from infection.

I know this sounds pretty “horrific” and it’s like how can one little child suffer so much BUT I want to share with you how she is just THRIVING now. She has started mainstream school, she has had NO infections, she is HAPPY, loves her school friends and teachers, never complains and captivates all who meet her. As far as vision goes she can see primary colours, bright shiny things, and large shapes (no definition) within 1/2 metre out of her left eye. Her hearing is AMAZING, she can tell me who is coming in a room by listening to their footsteps, even if she has only met the person once before. Her sense of smell is amazing and she is VERY TACTILE. She is fussy with food NOT because of the taste but because of the texture. She was very tactile defensive not long after bringing her home refusing to “touch” certain objects, like teddy bears or soft “squishy” toys, balloons and play dough. With a lot of encouragement, perseverance and help from her Service Providers most of that has past. The food issue is ongoing but that will obviously take more time to overcome.

I recently heard a Dr. Lyndon Da Cruz (in London) had been working on stem cell research for blindness caused by diabetes He thinks it may be possible to cure but it is early days yet and test results won’t be finished for at least 5 and maybe 10 years or more. I contacted Dr Da Cruz to ask if retinopathy of prematurity might be able to be reversed by stem cell therapy but was told no.

There is so much more I could say about my little girl and what she has really been through, this is just the “tip of the iceberg” really BUT I know “we” have turned the corner and I know I am no longer at risk of losing her, how relieved I am to type those words. If anyone who reads this can offer me any advice or hope that I may be able to seek help for her to have her sight restored to her left eye, even minimally more I would be ever so thankful and would follow up any “leads” to pursue that for my beautiful daughter.