Hani and her dad came to the hospital for the first assessment today, with a big group of other families. Hani is a really lovely girl, and her dad was pleased to show me some beautiful drawings she has done, and lots of nice pictures of their family back in Kurdistan.
Hani was thoroughly assessed with echo, ECG, measurements and a case history. The doctor explained that he was able to confirm the diagnosis made in Kurdistan of Ebstein’s anomaly, and that Hani is at the severe end of the spectrum. This is due to the information provided about her struggling with climbing stairs and becoming breathless. She is also not really able to do any exercise or sports, although her dad wants her to learn karate! So, her condition really impacts on her quality of life.
The good news is that the doctor felt that surgery was very likely an option for Hani, and that he is going to discuss her case with a medical team to decide what is the best plan. He suggested that it would be a complex surgery, and gave lots of interesting information, for example, that the most modern technique was developed in 2017 by a surgeon from Brazil, who sometimes carries out these surgeries at the hospital here in Israel.
He expects that if this goes ahead, they also will need to have an intervention via catheterisation to check the electrical condition of her heart. He says that the ECG today doesn’t show any signs of problems, but that as around 30% of patients with Hani’s diagnosis have problems with the electricity, it would likely need this assessment as well, to ensure best practice.
All in all, Hani’s condition was confirmed to be complex, and we really need to pray for her situation. Its hard to describe to you just how sweet she is. She had quite a nice time at the hospital, and while she was waiting, she went to a science activity with Sophie and they made a kaleidoscope, made light circuits, drew in the dark and investigated magnets.
Please lift up this special girl in prayer, and pray for wisdom for the medical team.