Anna’s story is one that started only two weeks after this blog was launched. After our 20 week ultrasound, we got a call back from our midwife saying that she was abnormally small and had low fluid. This led us to having multiple diagnoses with different MFM (Maternal Fetal Medicine) doctors that ultimately ended with finding that she had Bilateral Renal Agenesis. Or to put it more frankly, her kidneys never formed. Up until 2013, this diagnosis was considered fatal, but since then there have been 3-4 different survivor stories of children who were born with enough weight to be immediately put on dialysis till they are old enough for a kidney transplant.
We were faced with the reality that Anna’s life would not be a normal one. The very next week we started treatment that would allow Anna’s lungs to begin to form and be ready for a birth that could take place much sooner than normal. This was extensive and would have eventually turned into a 3-4 year process of being in and out of the NICU till she was big enough to have a kidney transplant.
4 weeks into doing everything we could to save Anna’s life, Emily went into spontaneous labor and Anna was born at 24 weeks and one day. She weighed only 1 pound. This was too soon and Anna too small to have a chance out of utero. She lived 13 minutes, making effort to breath with her unformed lungs and peacefully went to be with Jesus in the arms of her parents.
Anna’s life has radically changed ours. She has made us passionate for children with every kind of need who are not seen as worth it. Our first advice given from a doctor was to abort this precious life because we would sacrifice our own to try and save such an extreme case. This further presses us to advocate for life in and out of utero. Truly God chose who is significant by making all people in His image. We fight for His glory in longing to bring awareness that every life, visible or not visible, is precious.
Below are some resources on what her diagnosis really was, the video of her memorial service and the slideshow we made of Anna’s life. We pray you are also inspired to defend lives, both normal and abnormal in reflection of the gospel.
What is Bilateral Renal Agenesis?
Anna Nicole had Bilateral Renal Agenesis. This means that she developed no kidneys. The link above puts this condition in very simple terms of what our life procedures started to look like in the 4 weeks we had to fight for her life. We undertook these procedures at Colorado Children’s in Denver. This condition is only treated in about 3-4 hospitals nationwide, and sadly there are very few survivor stories. All of the treatment is through experimental studies since it is such a rare case. About 1 in 10,000 babies are born with this diagnosis. To put that in perspective, Down syndrome babies are about 1 in 1000.
Slideshow of Anna’s Life
Anna’s Memorial Service Video
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