I've been using my blog here at SYS and social media to promote Prematurity Awareness Month since November 1st. Many of my friends are familiar with our personal story, how Hanna and Rachel survived their extremely early birth and how our family gives back year round to the March of Dimes. We have made it our mission to educate, and erase misconceptions surrounding prematurity.
This morning a friend of mine shared a link to a news article from CNN about a baby girl born extremely premature. You can read the article here: http://cnn.it/2iEMmlh
Even before I read the article I immediately felt anxious, and even a bit angry. Angry because I know there is going to be a mom out there, still pregnant and think this is the norm. A safe norm. That micro-preemies will be just fine. This caption is what caused my strong emotions.
"The baby was born before 22 weeks of age (and she's fine)."
Just think about that. That caption has the potential to create false hope. I know I'm preaching to the choir when I type this here, but babies this early can rarely be intubated, despite a doctor's best efforts. No matter how strong that desire is to save a baby. When my water broke at 23 weeks our doctors were very honest with us. Our babies survivability, had they been born that night or even 3 days later was less than 10%. And if they survived, the likelihood of long term complications for each of them was near 100%. They were simply too small to withstand such trauma. I recognize that the decision to resuscitate any baby born prematurely is a very personal decision guided by your medical team. And I don't judge anyone for their choice. Kirk and I made the very difficult decision to place a DNR order in place for Hanna & Rachel if they were born prior to 24 weeks gestation, the identified cusp of viability at that time. To write that, even now, 16 years later brings me to tears. And I'm eternally grateful we were never faced with that reality.
I did go on to read that article and the Mom shares that she felt a strong will to give her daughter every chance at life and ask the medical team to resuscitate her baby. I fully understand that. Love is a powerful thing and I imagine if faced with the same decision I may have done the same thing. Even though before seeing my babies I had a different wish.
The doctor states in the article that this is just one case and we need a lot more research in cases of babies born prior to 22 weeks. That we have to proceed with caution about one baby surviving after such an early birth. The article clearly points out that while we may continue to see "more babies actively treated at 22 weeks and surviving, with good outcomes, the great majority won't survive".
This little girl spent 126 days in the NICU requiring extreme and prolonged care. Today she is 3 years old and has suffered no vision, or hearing complications or cerebral palsy. She is in preschool, and is keeping up with her same aged peers. Once again I feel the need to caution the world. My preemies were seemingly "caught up" to their same aged peers in preschool. I had some concerns about Rachel and was constantly reassured by her teachers that she was just a little delayed and would catch up. Today at 16 years old she has 6 neurological diagnosis as result of her premature birth. Autism and Severe Anxiety the most impacting.
There is still so much we don't know about babies being born at 25 weeks. And that's been happening for 30+ years. How can we possibly know what the outcome will be for babies born prior to 22 weeks? We simply don't.
I'm not angry that this mom made the decision to try to save her child. I'm not angry that the medical team resuscitated this baby girl. I could never be angry about that, regardless of what her long term looks like. I pray that this little girl continues to grow and do well. That she is perfect in every way and has absolutely no lasting effects of her extremely early birth. In my experience that's just not likely. That's why the caption on the article and the implication that a baby can be born this early and be "fine" makes me angry. The reality is premature birth has a lasting impact on these very tiny, very sick babies and often times those effects last a lifetime.
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!
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