Yesterday hubby rang me to say that my sister-in-law went for a scan of the baby and that they found an abnormality. He said there were some cysts in the liver and it was enlarged. He wanted me to go and ask the advice of my colleagues about what it was... but without the report or anything I didn't think I could offer any advice, and that they should go see a specialist.
When the formal report came, it was actually that BOTH kidneys were abnormal. One had cysts in it and was enlarged, the other was hypoechoic with a dilated renal pelvis. The AFI was normal which was reassuring (ie kidney function was probably normal) but the other bit is pretty bad. From my limited medical knowledge, it seems to be juvenile polycystic kidney disease which is autosomal recessive disorder, and has a poor prognosis. If it is diagnosed at 24 weeks then the prognosis is worse. It is characterised by hyperechoic kidneys, cysts develop later in infancy. I suppose the presence of cysts already could indicate really bad disease.
Severe cases have hyponatremia and other metabolic disorders and recurrent urinary tract infections, and are not expected to live more than one month. If the child lives to 18 months then they can be considered for renal transplant.
That's just talking about PCKD AD. I don't really know what they have. I am not sure there is any genetic testing they could do. My poor SIL is so upset, she wants to have the pregnancy terminated. Unfortunately she will have to deliver the baby vaginally if that is the case which is all the more traumatic. Currently the foetus is still viable and at 30 weeks has a good chance of survival (without the kidney troubles). I have to say if the situation was reversed and it was me facing this dilemma I am not sure what I would do. I know I would not want the poor child to suffer, but I suspect that I would have the baby and let the baby pass away on her own. It is a terrible thing to have to do, or even have to contemplate, but I think my poor SIL is too shocked and upset to be thinking about anything other than to get the abnormality/mutant out...
Then today I walked into birthing unit and the educator was wrapping up a dead baby. A little boy. The mother had an abruption and was transferred from another hospital to here, and the baby died en route whilst the mother bled to a haemoglobin of 60 and required a blood transfusion. The mother is of Arabic origin, and she has 6 daughters at home, and the baby that died was a little boy. She was very sad, and worried that the husband would blame her for losing the son (boys are very important in arabic culture as they seem to be in almost every culture!) because she had had a fall and that caused the abruption. So sad to see all these little lives lost, who never got to know their future.
I think that about my niece-to-be. What could she have been like? Would she have done great things, made some great changes to someone's life, influenced the world somehow in that small butterfly effect way? The way things are going, I don't think I'll ever get to meet her, and she will never get to do anything in her short life. And though babies should bring joy to people's lives, her being born will only bring sadness, and what is even more sad is that maybe nobody wants her because she's got an abnormality. If she gets born, I doubt that she will be born here, they will probably go back to Taiwan (in fact I recommended that they go back to Taiwan so my SIL can have the support of her family there).
I just have to be thankful that I have 2 children who are happy and healthy so far. Who knows what tragedy may befall them further down the track. I should enjoy them now and every minute I can spend with them.
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