So to update you all, I had my dd a few weeks ago and we ended staying in hospital for pretty much all that time due to a few issues caused by the antigens. Basically two week before I was due (on a Wednesday) I went in for a final scan to check the blood flow to the brain was all fine and on the way to the hospital I got a call regarding my last blood test to say that the antigen level which was hovering around the 1.00 mark (very low on the scale) had sky rocketed to 66.0!! All this time their monthly blood reports stated that there would be a minimal effect on the baby and a low chance of haemolytic disease of the newborn. But due to the sudden increase they summoned me in ASAP. I had the scan as planned and they asked me to come in again later that day for a chat with a consultant. This was on a Wednesday and then they gave me a letter saying I was going to be induced on Thursday. The next day!! Which was two week early but they didn't want to risk the impact on the baby.
So I went in Thursday and started the induction process. Saturday morning dd was born. They took blood from her umbilical cord as planned. We then went to the postnatal ward and they took her bloods again from the heel. Her jaundice/bilirubin levels were very high, more than normal babies so they put a blue photo therapy light on her. 6 hrs later they checked the bloods again and she was on the 'exchange' line which meant they would have to exchange her antigen filled blood for clean blood which was a dangerous process. But before that they took her down to neonatal and placed her on a light bed to give her more phototherapy. 6 hrs later her bilirubin levels came down a little. They kept her in neonatal for 3 days until her level was below the phototherapy line. We were both moved the transitional care where they kept only one set of lights on her but this lasted for 5 days. It was tough to feed because the moment she was taken off the lights I knew her level would go up so she was tube fed for basically the whole week. She was kept blindfolded for that whole time too.after 10 days we were allowed to go home for one day as her bilirubin levels had gone down a lot but then the next day her level had risen high again. This cycle went on and on for another 5 days until eventually it began to stabilise. We thought were finally at the end but then they revealed that her haemoglobin levels were dropping so prescribed iron and folic acid. 2 days later they were still dropping so they increased the dosage. They told us to go home but to come in every 3 days for blood checks. 3 weeks later her level has dropped to the point they would do a blood transfusion but they're holding off as they can see her bone marrow is also producing more healthy red blood cells so they're hoping this also stabilises. This will be an on going issue for several months and we may end up having to give her some clean blood via a transfusion but at this point it's fair to say we've gone through so much that if that's what it comes down to then so be it.
This is a long post because I was looking for these answers when I was searching for other people's experiences in having antigens so I hope this helps anyone who is wondering what haemolytic disease is, how it will impact your baby and what the procedure is to help you little one fight it. Be prepared for a lengthy stay in the hospital!!!