heartbroken.

So it’s been one week since we found out. One week that has been the longest week of my life. I’ve still got I have no idea how many weeks to get through like this.

On Wednesday, June 18, I went to pick up my scan results from my 20 week scan. La la la…biggest worry was keeping my toddler busy before she made a mess of the place. Well, little did I know. Fifteen minutes later I left in shock, trying to stay calm and telling myself the scan results were probably a mistake and due to a bad picture, or they wrote the wrong results on the wrong person’s scan report, or something.  Twenty minutes later I got a call from the Adelaide Women’s and Children’s Hospital. Can you come in first thing tomorrow. Okay….now that was scary. Tertiary  hospitals don’t usually call you within half an hour of a referral being faxed through. Let alone tell you to come in first thing tomorrow morning.

Thursday, June 19, we had a two hour long scan. Radiologists in the room making sure they got the pictures they wanted. I could see the problem from where I was lying. The scan results looked like they were correct. An hour later, we found out for sure that our unborn baby has massive medical problems. Something called bilateral multicystic dysplastic kidneys. Basically, there are big problems with both kidneys. The left kidney is 6cm long (whereas a healthy newborn’s kidney is 2cm long) and is covered with cysts. They don’t think that kidney’s working at all. The right kidney is 4cm long and also has multiple cysts. Technically that kidney shouldn’t be working either. But because they could see a little bit of urine in the bladder…and my amniotic fluid levels were all right (lower than normal, but all right) they think that kidney might still be holding up at the moment.

(Small amount of fetal A&P here….basically in second and third trimesters the amniotic fluid is almost entirely baby’s urine. Baby swallows amniotic fluid, which helps with its lung development, and it is filtered by the kidneys and comes out again and is swallowed again and so on and so on).

It’s just IS that kidney going to hold up, and if so how long, and how much renal function will baby have when s/he is born, and what about lung function, and are there any other comorbidities (they couldn’t see anything but they were quick to say that doesn’t mean there aren’t) and what do we do? It’s not looking good. Most babies with bilateral multicystic dysplastic kidneys die. They said our chances of taking a healthy baby home are very small. Best case scenario: baby is born with enough renal function to feed normally and put on enough weight to make a transplant (Adelaide wont’ transplant kidneys for children weighing less than 10kg. Westmead Children’s in Sydney might do it at 10kg, but no one in Australia would go lower than that.) But that is a slim, slim chance we would ever get far enough to be eligible for a transplant.

And then what are the other options? If bub is born alive but with minimal or no renal function, we would have to choose between dialysis or palliative care from the word go. Dialysis would be likely to be a dead end street. Maybe I worked in paediatric ICU too long. But I can’t see a sick baby that needs dialysis from the word go ever putting on enough weight to be eligible for a transplant. But is palliative care any better? If baby’s lungs are doing ok, and its kidneys are the only thing wrong, then I’m scared baby could survive for weeks, months. I looked after an old lady a few months back who had refused dialysis and died slowly of renal failure. It wasn’t pleasant. Of course, is it ever? But I don’t want to put baby through that either.

They were quite quick to offer termination. Which is something I never thought I’d even consider.  But when it seems pretty much hopeless on all sides, and all the specialists you’ve seen are telling you it certainly would be a “very reasonable option in these circumstances” what do you do?

We went home and wrestled with it for days.  No one really wanting to say anything to each other. We finally decided last night to continue and give baby a chance and see how s/he goes. I called them back this morning. They’ve been wanting us to make a decision. In South Australia it is very hard to terminate later than 23 weeks, which I’m probably close to at the moment, so although they’ve been very nice about it, I have felt the pressure for them wanting to know soon if we decided to go down that path. But I know in the end, I just couldn’t do it. Baby deserves a chance. You never know. Maybe God will work some miracle or maybe everyone will  just be plain wrong? Slim I know. But I couldn’t live with myself knowing I never gave baby that little, tiny, tiny, chance.

They called back while I was writing just before. They are really lovely, which made me cry again. Fortunately the lady on the phone, who we didn’t see last week, had read our file and so I didn’t have to explain the whole story. I said we wanted to continue and I think that’s about all I was capable of really saying. They want us to come in again next week and see more specialists. Palliative care was mentioned. I couldn’t handle it and started to cry again.

I don’t know how I’m going to do this. I just don’t.

 

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