The Dynamic Duo--Hanna & Rachel

False Hope

  • I totally understand what you are saying.  I love how much you work to educate people about prematurity and the possible repercussions.

  • I completely relate to that. Whenever I articles that are similar to that I get extremely defensive and I dissect every single statement made. If not backed by scientific information I often question the validity. These articles and stories are what make people so flippant about prematurity " Oh I'm sure he will be fine, they can do so much for babies now." If "so much" simply means they survive and go home, then yes of course. Unless you have lived it you have no idea about all of the physical and neurological issues a child can face as a result of premature birth. I too agree that I can't be angry with the mom who wants her baby to live- I would give anything for Josie to have lived longer, to have more pictures and more memories, but I would rather give anything for birth defects and prematurity to be prevented to begin with. Thanks so much for this very honest post.

  • Ugh don't get me started on this topic! But obviously, I've started ;)

    This all drives me crazy. No, having a baby go home alive is not all that is needed to call this a success story. The effects of prematurity last for the full life course, maybe twenty years ago we did not know that? But today we know it. Research and personal experience shows it, again and again. Even babies who go home with no morbidities or lasting complications at discharge or by age two, face decades of complications that are not evident until later. I also rolled my eyes when I saw the article posted and I hope the best for this child.

  • Thank you for this post, Karri. The reality is so much more complex than any quick media hit like this can capture. Headlines like these totally contribute to that environment where NICU parents in the most traumatic struggle of their lives are so often dismissed with false reassurances like "They'll be fine."

    And this goes along with so many of those insidious myths confronting families like ours that I tried to take on w/ all my writing and speaking about Mila's story. For starters:

    1) That only those apparently unscathed "miracle babies" are worth saving

    2) That parents of premature babies are always hell-bent on saving their babies no matter the cost (cost in every sense of the word), no matter the outcome

    3) That we can draw definite lines around which babies ought to be saved -- ie, 25/24/23/22 weeks -- because that is so much more comforting to people than accepting that the basic enterprise of treating medically fragile babies (as with any human beings) always has been and always will be a tremendously uncertain undertaking that defies any easy rules.

    In case you're interested, here's an excerpt of GIRL IN GLASS that ran in FORTUNE that gets into some of these issues in what I hope is a more nuanced manner:

    In any case, thanks for your great insights and honesty as always, Karri!

  • Karri -- stories like this make me very angry too because my sons were born at 22w5d, and I was immediately told by my OB/GYN and the NICU head that there was nothing they could do to save my second son.

    The son of an old co-worker had a baby a few months ago who was born at 21 weeks -- and she lived for four days. As soon as I heard of her birth, I was sick to my stomach -- as I knew the baby would have too many hurdles to overcome. I was completely shocked that she was placed in the NICU -- as again, I was told my babies weren't far enough along to even have a chance at being there.

    I know I would have been like this mom who would have moved heaven and earth to save her child, because I had fought so long and hard to have my sons. I hope this baby defies all odds, and I hope that some day, prematurity is eradicated completely.