Just read about a baby who died of ARPKD at 5 days old. She was stable on the ventilator but not producing urine so the doctors told the parents to remove the ventilator because there was such a poor prognosis. These American doctors keep giving no hope and yet, Stephen Schwartz is almost one month old. Lindsey and Bill found the strength to find doctors like ours and have been blessed, though life is hard.
First of all, this just shows a failing in the American system. The RVI have only told us, yes, Ellie could die, this is serious but this is what we will do. We may need to remove both kidneys. She probably won't wee and will need dialysis, which comes with complications. The level of medication for blood pressure may be high. Her lungs may not be developed. BUT we will try to help you, we will do what we can. There is 70% chance and we will fight.
Thank you NHS for being so advanced, well informed and well structured. An NHS doctor told me there are 13 centralised paed nephrology units in accessible locations and these all have incredibly specialist doctors rather than thousands of private practices where doctors probably see a lot less of ARPKD.
We really are in the right place. I feel for these families who have not had our luck and been given our hope. We know what is coming is hard and the worst may still happen but our teams are doing all they can for us.
People complain about the NHS but the UK is soo lucky to have it. Health insurance is such a pain here... not as much as a nightmare as in the US, but it is possible to fall through the cracks, especially if your earnings fall right on the border between the state paying the health insurance fund and you having to do it yourself.
ReplyDeleteThe RVI is an amazing hospital. It's where my stepmum spent her last days, and she was looked after so well. Obviously in a different part to where you'll be, but the staff are just fantastic throughout the hospital.