Before Michael's surgery, we were told to go pass the time and come back at noon. That's precisely what we did but, due to a crisis with another baby in ICU, we had to go to the waiting area. After a while, I went to get a snack and, when I got back, I found Trevor chatting to the woman who was sitting across from us.
Well, her name is Casey. She and her family are from the USA, her husband works for UNICEF and they live in Uganda. When I left the waiting area, Dr Vosloo came to speak to Trevor and also spoke to her about her daughter. She remarked that our children had similar cases so Trevor and Casey started chatting.
It turns out that her family's story is almost identical to ours. They have a 2 year old daughter, had a great 2nd pregnancy, found out their daughter Sasha has Down Syndrome when she was 10 days old and they learnt of her heart defect shortly after. There are, of course, a few differences. Sasha's defect is somewhat different to Michael's, she's a bit older than him and she had to have a repair done although the original plan was for her to also do the PA banding before repair next year.
Anyhoo, medical stuff aside, we had such a great talk about the experience of receiving the diagnosis, all the emotional difficulties, managing a toddler and all this info with a newborn. We talked about the feelings, peoples' response, plans for the future and research. It was incredible to find another family who experienced everything we had experienced.
Casey's done quite a lot of research and she's a teacher so she's passed on some great information to me and we're giving them tips on doctors and stuff here in SA. Because they live in Uganda, her approach to Sasha and Down Syndrome is very practical and hands-on due to the lack of infrastructure and support they have there. Trevor and I are also quite keen on that because we want to be able to support Michael in any way we can with early intervention.
It's something of a miracle that we met these great people and that we clicked so quickly. I said to Casey today that it's going to be quite nice to have a day or two in the paeds ward together so I can meet her daughter properly and she can see Michael. They'll only be in Cape Town for another 3 weeks so I hope we'll all be able to get together with the kids outside of hospital before they head back home. Seems we got a healthier kiddo and some new friends.
No comments:
Post a Comment