Wednesday, January 30, 2013

Akif's Battle Against Hydrops - Week 33-34

Hello Everyone,

Today was my last ultrasound and no changes in Akif. Hydrops still there, ascistes as well as the edema. But what also astounded my feto-maternal specialist was Akif's heart, beating strongly and surviving against all odds. She was up front when she told Bonda that she strongly did think that Akif  would have expired intra-utero by now.

We are currently waiting for the results on the advanced DNA testing that they have conducted on my blood for Alpha thalassemia to find out whether Akif has St. Bart's, which is a syndrome not compatible with life. If that comes back positive, they will wait for normal labour to occur, as there is 0 chance of Akif making it out alive and they do not want to waste my c-sect opportunities (I already had 1 for Airiel, so 3 left).

If that comes back negative (which would mean that the hydrops is still idiopathic and is due to unknown causes) and I hope to know latest by next Monday due to the amount of holidays in between that, then I am slated for surgery on Tuesday, 4th February 2013 to get Akif out. And I will be warded by Monday the day before.

We had a discussion with a neo-natal specialist who informed us of the poor prognosis, but was also optimistic about possibilities. If Akif survives...then they will try to determine the cause once he is outside my tummy and maybe then can fix it there.

Aries is as optimistic as only a man could be (either that or he is in denial - am not sure). I am hoping for the best but like I said, prepared for the worst.

I am hoping and hoping that it is not St. Barts. That it comes back negative. We do not have a history of this in our family at all but the doctors just want to be sure.

I am being 2 doses of steroid shots the specialists hope can help Akif's lungs prepare for life outside my tummy. So at 12 midnight I am going again to UH for a follow up jab after the first one this afternoon (it has to be taken at 12 hour intervals). Hurts like hell, but I don't give a crap. Whatever it takes.

Meanwhile, I am just preparing everything for my surgery. Packing my hospital bag, informing my bidan, keeping myself busy.

It is a long wait till the test results and also the surgery. But the moment is finally here. I will get to see my beloved Akif, and I will cherish the moment no matter how short it is.

Mama loves you Akif, enough to let you go if need be...enough to keep fighting with you if that is the way it is fated...

Please help this family dear Allah. YOU are our only hope.


  1. Hi there,

    I'm yr silent reader. I pray d best for you. We always hope for d best, and we need to prepare for the worst as well..

    Kuatkan semangat. Ameen.

  2. Ya Allah, m having it too now.hydrops fetalis :( m not alone rupenye.karier kite pun sm

  3. hi nor aini, how far along are you? unfortunately, akif did not make it. i hope and wish all the best for you and your baby

  4. Iza, we are in the same support baby is still in nicu.fighting n fighting :) he is 15days old today. Yet the future is bizzare.