Monday, February 24, 2014

How can I ask the Lord this???

Hello Dear friends,
It's worse than we thought, way worse, if that is even possible.


Our baby has been diagnosed with Alobar holoprosencephaly, a condition where basically the brain does not divide into two hemispheres, but rather is in one u-shaped chunk. We are undergoing further testing tomorrow to test whether there is also an underlying genetic condition like Trisomy 13 or 18, which they are suspecting. Basically, it looks like our child may not be able to breathe on its own, or have a pituitary gland which is required to control hormones which control various functions like kidneys, for example. In most cases, this condition is fatal. We are beyond devastated and have cried a million tears. It is likely that this is a genetic condition, so we are probably done having kids as well. It breaks my heart to know that Sophie will probably be an only child.  Our lives are in complete turmoil right now - our worst fears have come true.

We should know at our 15 week u/s the degree of severity of this condition, but they are suspecting the most extreme. The mildest forms can manifest themselves in developmental delays, similar to Down's Syndrome, while the most extreme can cause facial anomalies, like the absence of a nose, one eye instead of two...and death.  We do know that our baby has two eye sockets and a tiny nose, but the face is 'smooshed' and affected.  They believe that we are leaning towards the most severe end of the spectrum.  In milder cases, the child might be expected to survive, despite severe mental and physical challenges - but they are preparing us for miscarriage, still birth or death after delivery.  This happens to 1 in 4000 babies, so about once a year at their hospital and I guess we're just the lucky ones. Sadly, it breaks my heart that as a parent all I can pray for is a peaceful death for this baby - please continue praying for us, we need all the strength we can muster.

We are undergoing transvaginal CVS testing tomorrow [they take a part of the placenta for genetic testing] and we should have preliminary results by Thursday indicating if our child also suffers from Trisomy 13 or 18, or Down's Syndrome in conjunction with the above. I just can't believe that this is happening to us...in a way, again.  No parent should have to think about their child's funeral before they are even born...


11 comments:

  1. I am just reading this. I haven't been blogging recently. Please email me, Michele.haytko at gmail dot com... Let me know how I can help. I'll be praying of course. www.mendingheartbellies.com has some info on perinatal diagnosis as well, but please, please email me and let me know how I can help.

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  2. Hi Michele - I have no idea how you can help right now. We are just in shock. We will be meeting with a faculty member at the local seminary who specializes in theology and canon law and can guide us on how to proceed and minimize the pain to our baby. I'll try to keep in touch when I know more.

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  3. My heart aches with you and my prayers are flowing to God to give your comfort and strength through this tragic time. Please know that I care and I am praying for God to bring a miracle to you and your precious baby.

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  4. My heart is broken for you. I am so sorry. I am still praying for a miracle for your precious child. I will pray that The Lord carries you through and that you feel Him close during these difficult days/weeks/months. I pray that He brings healing to this child that no doctor can explain. I pray that this precious child is able to grow up with Sophie and is able to lead a happy healthy life. I know that is not the prognosis, but with The Lord ANYTHING is possible! I pray for peace and comfort for your entire family including this precious child no matter what happens!

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  5. Oh, Joanna! I'm so sorry this has happened to you and yours! Praying for your sweet baby!! We're here for you!

    ((hugz))

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  6. Thinking of you and your precious family and praying for you all ((((Hugs))))

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  7. Oh, Joanna, I'm so sorry to be reading this. You'll be in my prayers.

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  8. Sending love to you, ALL of your babies and your entire family and praying for each one of you <3

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  9. You and your precious family is still in my thoughts and prayers. I can't imagine what you are going through. I am so sorry. I will keep you all in my thoughts and prayers.

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