Rare condition adds years to child’s life
ELEVEN-week-old Rohan Faramand-Khadem was diagnosed with an extremely rare condition that may have saved his life.
When Rohan's mother Shideh Faramdand was 20 weeks pregnant, she and her husband Efran Khadem found out their son had Hypoplastic Left Heart Syndrome, which means the left side of his heart can't pump blood to the body.
Rohan was also diagnosed with Hetertaxy Syndrome - right isomerism, which means Rohan has two right lungs, his stomach is on the right, and he has no spleen.
Mrs Faramand and Mr Khadem were told when their son was born, he would only have weeks if not days to live.
"At the 20 week scan they explained how severe his condition was and gave us the option of termination, they said surgery was very complex, and the third option was palliative care," Mrs Faramand said.
"We chose the third option. We didn't want to terminate, we wanted to meet him.
"He came out and he cried and didn't have to get oxygen or anything … and he fed beautifully like any of my other children."
Mrs Faramand said they took Rohan home to meet their three daughters, with instructions from the doctor to keep him comfortable, not knowing how much time they would have with him.
"It was a real emotional rollercoaster," Mrs Faramand said.
At fives days old, Rohan was doing well and his parents took him to see a visiting cardiologist at the Toowoomba Hospital, where they discovered he had Major Aortopulmonary Collateral Arteries or MAPCAs, which are pulmonary arteries the body grows to compensate for lack of blood flow.
"It's very rare," Mrs Faramand said.
"(The cardiologist) said he suspected why he was doing so well was because of these MAPCAs.
"He said he had never seen a case like this before."
After finding out about Rohan's MAPCAs, Mrs Faramand joined an online heart forum where she met another woman in Melbourne whose daughter had the same conditions as Rohan, including MAPCAs, and was 27 years old.
"We went from being told our baby could pass away any day, to thinking we could have a lot more time than we originally thought," Mrs Faramand said.
"We went to a cardiologist in Brisbane who is monitoring him and gave him medication to support his heart and said to treat him as normal healthy baby.
"We are just going to enjoy the time we have with him because we don't know how much time we have, it could be years."
Mrs Faramand said Rohan was a miracle baby.
"I feel very blessed because here we have this healthy baby who doesn't have to go through surgery, and we get to spend time with him. We feel very lucky.
"It's unbelievable that a child with this condition is living, it's very rare."
Mrs Faramand's friends have started a GoFundMe page for Rohan which has raised more than $3000 for his ongoing care, but Mrs Faramand said she was glad surgery was not necessary for her son at this stage.
To donate, visit www.gofundme.com/f/rohan-the-wonderboy