Roman – HLHS, Bilateral Cataracts, and IOL

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This is Roman. Roman is 19 months old. Roman was born with an undetected heart defect known as Hypoplastic Left Heart Syndrome. The left side of his heart did not develop. On the morning of his third day, Roman’s health quickly declined and he went into shock. It was then the doctors discovered that he had HLHS. Roman would need a stage of three surgeries to try to repair his heart. At 7 days old, we handed over our little man for his first heart surgery. Unfortunately, Roman had many complications including a stroke, feeding issues, several coding events, and continuing heart failure. Roman’s only chance of survival would be a new heart.

Roman was placed on the heart transplant list when he was only 3 months old. After 3 long months of waiting we finally received the call that they had found Roman a perfect heart. At 6 months old Roman received his gift of life.

Roman was immediately started on a lot of different medications to keep his immune system from attacking his new heart, one being a high dose of steroids.

Finally at 7 months old we were able to take Roman home for the first time. Before leaving the hospital, Roman had several evaluations, including an eye exam.  At that time Roman was found to have no issues. We were told to follow up in 6 months. To our surprise, at Roman’s six month follow up Roman had developed cataracts in both of his eyes. Our doctor believes that the medication Roman is on caused his cataracts.

Roman had both of his cataracts removed, and IOL’s inserted. It was so amazing to watch Roman take in his world as soon as the doctor took off his eye shields! Roman quickly caught up developmentally after his surgery! He even started walking!

We are so proud of our little man and what he has accomplished!

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