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    Paetyn's Acrania

    Throughout our entire experience we have loved sharing our baby girl with everybody.  We know we aren't the only ones who have a lot of love and emotions invested in her and we want you all to have the opportunity to experience everything about her!  On this page we want you to have the opportunity to learn about and see Paetyn's Acrania condition (pictures at the bottom of the page)

    We learned of Paetyn's acrania on October 17, 2017 (23 weeks).  We were told there were 2 possible causes of Acrania: 

    1) A neural tube defect - Neural tube defects are birth defects of the brain, spine, or spinal cord. They happen in the first month of pregnancy, often before a woman even knows that she is pregnant. The two most common neural tube defects are spina bifida and [acrania]...In [acrania], most of the brain and skull do not develop. Babies with [acrania] are usually either stillborn or die shortly after birth.

    2) Amniotic bands - Amniotic band syndrome is a rare condition caused by strands of the amniotic sac that separate and entangle digits, limbs, or other parts of the fetus

    Acrania is most generally cause by a neural tube defect, however the cause cannot be definitively determined until after birth.

    On December 13th (32 weeks) we had a follow up ultrasound with the prenatal specialist.  They wanted to give us another chance to see Paetyn on the ultrasound as well as check her condition and measurements.  We also met with a genetic specialist during this appointment to discuss the likelihood of issues in future pregnancies.  While we were talking with the genetic specialist, the prenatal specialist was looking at Paetyn on the ultrasound.  We were discussing acrania as caused by a neural tube defect in regards to future children when the prenatal specialist cut in to show us something on the ultrasound.  She could see what appeared to be a fairly severe cleft running from the left side of her mouth up her cheek almost to her eye and that her nose seemed to be slightly deformed.  Believe it or not, this was actually great news.  A cleft like this is almost certainly caused by amniotic bands!  This being the case, there is a "less than 1% chance of re-occurrence".  She could also see that Paetyn's brain was attached to the amniotic sac caused by amniotic bands.  This was more good news because it not only helped to confirm that this condition was caused by amniotic bands, but also because Paetyn's brain remained very much in tact throughout the pregnancy because it was protected by the amniotic sac.  When we heard this though we were concerned that it would cause issues with delivery, but the specialist assured us that it would not be an issue and that the bands would rupture with no problem during delivery.  With these new finding in mind, we made a plan with both specialists for them to come examine Paetyn after she was born to confirm their findings.

     

    Below are pictures of Paetyn's condition.  Please be aware that this can be a bit shocking initially, but we want people to be able to see what our beautiful baby girl looked like!  Her imperfect body is what made her her and we never want to hide that or keep it a secret in any way.

     

    Notice in the pictures below the membrane around her brain.  We are told this is part of the amniotic sac which kept her brain so intact!!

    This picture shows the back of her head which gives a good look at the membrane as well as an 'encephalocele' which is a "sac-like protrusion or projetction of the brain".

    During our ultrasound on Wednesday the technician noticed this "bump" on the back of her head, which obviously we know now was this encephalocele.

    Here is a picture of her face as well as an ultrasound image of her face for comparison.  The ultrasound (mirrored image) clearly shows her eyes (2 black spots), where her skull ends just above her eyes, her brain above that, as well as the deformity in her lips.  You can also obviously see that the cleft that we thought would be on her left cheek was actually the cutest little "skin tag" (at least thats what we call it, not sure if it has an official medical name).

    Although Paetyn didn't have the severe cleft on her left cheek that we originally thought she would have, she did have a cleft in her mouth.  You can see in these pictures below that she didn't have lips under her right nostril.  It's almost as if her lips were all smushed over to the left side of her mouth!

    These 2 pictures were taken shortly after she had passed.  You can see that at this point the membrane had started to dry out, and you can also see just how intact her brain was.  Look closely and you can see folds in her brain.

    We were able to keep Paetyn's body with us while we were in the hospital; as the days went on, her brain continued to dry out and became significantly smaller and much darker.  This picture was taken on Wednesday the 21, just before we left the hospital.

    Acrania