Retinopathy of prematurity


Luka was born at 27 weeks, 3 months premature, on December 12, 2019 weighing only 935g. He was born with an Apgar of 8 which was a good start to his NICU journey. However, within a few days he was losing weight and had Sepsis, a systemic infection. He became unable to breathe on his own and required ventilation. He spent two and half months on ventilation and was diagnoses with broncho- pulmonary dysplasia. In addition he received a total of 10 blood transfusions. Our baby Luka is a fighter and at three months was finally able to come home to us. Then we were informed that Luka had a serious eye condition called Retinopathy of Prematurity. 

Retinopathy of Prematurity (ROP) is a condition where the blood vessels of the retina develop abnormally and can ultimately cause the retina(s) to detach and lead to vision loss and blindness. ROP occurs in premature infants especially those born <1250g and born earlier than week 31. Other high risk factors include anemia, transfusions, breathing difficulties and weight loss. Our darling Luka had all of these going against him.  The only way to prevent ROP vision loss is early monitoring and intervention. unfortunately, Port of Spain General Hospital lacked the expertise to these sight saving measures. Luka has now been diagnoses stage 5 ROP. Both retinas are detached and he is unable to see. 

We, Luka's parents refuse to give up. We are doing everything we can to help Luka win this battle. We were fortunate to get on to the final repatriation flight to Canada so that we could bring him to Toronto Sick Children's Hospital where he has and is undergoing many test and examinations. He is seeing several doctors. The HSC Neonatal Developmental Team is working with him to provide a program to help him catch up physically and cognitively. 

Our hope is that our strong little fighter might be able to receive surgery to at least give him light perception and so we are seeking a second opinion from a ROP specialist in Florida. The cost for one virtual consultation alone is US $1000.00. The surgery, if considered possible, would be quoted starting from US$13000.00. Even without this surgery, our travel, living and accommodation costs in fight for Luka's sight are depleting our funds. I, Lukas mother, am unable to work in Canada. 

We are reaching out for any assistance to help offset our medical and living expenses while we fight to help Luka. Even if you are unable to contribute financially, we ask that you keep Luka in your prayers. Luka thanks you and we thank you. 

Every little thing counts.


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Marie-Dorothy Simonet 
Mississauga, ON
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