All the information of her lifetime,
and we got it in one short hour.
Ariana had issues. No doubting that. We were expecting most of what we heard today. Most. A few details surprised me, others confused me.
Ariana, our littlest angel was born with three spleens. This is, to put it bluntly, bizarre and not in any way related to her official diagnosis of neonatal haemochromatosis. The doctors have no idea why she was born with three of the organs that people routinely live without! We just sort of shook our heads and smiled, five months on, and she’s still suprising us!
Ariana also didn’t have just the one massive intracranial hemorrhage. She actually had multiple hemorrhages, in all different parts of her brain. Although it’s not easy to hear that news, it’s a relief to know that what we suspected was correct, that our baby COULD NOT live. It was reasonable to expect that even on ventilators, the doctors could not keep her heart beating, there were just too many things wrong.
Also to come out of the autopsy, She never spontaneously breathed, however she produced meconium before her birth, and managed to inhale a small amount. How this doesn’t equal taking a spontaneous breath I am unsure, but that is what the report says.
As far as treating subsequent pregnancies, the treatment protocol the hospital intends to use, is the same as Dr Whittington created which makes me incredibly happy. I will start the treatment at 14 weeks, and then from 16 weeks onwards, I’ll be hooked up to an IV at the hospital for 15 hours a day, once a week, to try to save this baby’s life. The treatment is crucial, and without it out bub simply won’t live.
I quit my job today. The risks to my health, and to the baby’s are just too high, and I can’t stand the thought of doing all this to help him or her, only to catch something as simple as a virus and have it all end badly. The downside of this is that I will have to remove Lucy from the childcare that she adores, we simply can’t afford the fees if I am not working, and Centrelink will be less than helpful, as per-usual.
I hate that we have to disrupt her life. I know she won’t understand that she can’t keep going. I know she will cry and beg (she does that every Friday! Her one day off!!), but to do what is best for this baby, we have to sacrifice a little. Unfortunately, Lucy will be sacrificing with us.
We meet with the Genetic Counsellor next week, and a week and a bit after that I will have my Nuchal Scan done. I don’t expect that scan to show us much, but the Ob has said she wants to take that opportunity to get a good look at “spud”, to see all there is to see. This pregnancy we WILL be monitored closely, every and all appointments will be at the hospital, and we will be looking for extra spleens – just in case.
For the most part, the appointment revealed all we already knew, and a few surprises. The treatment protocol is very, very promising. I’ll be treated until 35 weeks, at which point I will be give two steroid injections, and a C-section will be performed. Lucky me, I only have to be pregnant for 8 months, and it means we should all be home (touch wood), together for Christmas. Spud will spend some time in NICU, mainly for monitoring and to check Lung Development, but we really, really are relying on this treatment to pull him or her through.
Meantime, we wait, and watch, and pray.
If you could all pray too, that would really help us right now.