Knowledge is Power

In the last four months I have researched more about stillbirth than all other subjects for any paper I have ever written combined. I want answers. I want proof. I want to be educated. But mostly, I want to help others to become educated, no matter how taboo the subject may be. Fetal demise is real, its sad, and it CAN happen to YOU. Some of you will probably stop reading after that last line. You don't want to even think about the possibility of MY reality becoming YOUR reality. That's not okay. You may have a friend, relative, or acquaintance that is pregnant or hoping to conceive...they need to gain knowledge
(not just about stillbirth, but any and all information pertaining to unborn and newborn babies)...knowledge that hopefully will never have to be put to personal use, but would be more beneficial to have than to not have. "Better safe than sorry" ring any bells?

In those whirlwind two days in which I went so quickly from being an expectant and joyful mother to a woman grieving the death of her son I was forced to realize how oblivious and naive I had been.  As I promptly found out, it wasn’t just me who was unprepared to handle what was happening. My doctor seemed flabbergasted. The majority of the medical staff didn't know what to say or how to say it. Family and friends were broken and confused and seemed unsure of how to approach the subject. Silence became the default coping mechanism that day, and currently is still the most prominent.


My first hand experience combined with the hours and hours of research I have read through have lead me to the saddening confirmation that stillbirth is still an unmentionable topic in our society. Let's talk about cancer and alcoholism and rare childhood diseases that will inevitably all lead to death, but don't  you DARE think about discussing the looming possibility of carrying a child full term only to deliver a lifeless baby. No one seems to want to educate themselves on the topic. Even worse, medical professionals and others are afraid to mention the issue as a proactive measure. Why didn't my doctor ever causally ask me if I was knowledgeable on the subject? It would have prompted me to look into  the issue...to gain knowledge...to gain power.

No, I am not saying that stillbirth can be prevented. However, I am not certain that specific causes can't be determined and possibly prevented. I am not 100% convinced that I had no power in saving my baby. Had I been better informed about kick counts, fetal movements in the 3rd trimester, fetal hiccups, and any other warning signs of fetal distress my little man just MIGHT still be here. (I am aware of those of you out there reading this and thinking "Silly girl, it was all God's plan and there was nothing you could do" or " Everything happens for a reason, so stop trying to explain the unexplainable." but that's okay, because as a mother, I will always feel total responsibility for keeping my children safe.)
But guess what? Those things never even crossed my mind as being crucial in the well being of my unborn child. Everything "seemed" to be normal.

Research on stillbirth has so many gaps due partially to funding, but largely to the societal cheek turn to the subject. Did you know that the term stillbirth is defined differently in various states? I mean how can research even be conducted if we can't even get a universal definition? Accurate data has no way of being collected with such conflicting ideas.

Did you know that stillbirth occurs in about 1 in 160 pregnancies? Not as rare as you thought, huh?

Did you know that placental problems, birth defects, growth restriction, and infections are the most common KNOWN causes of stillbirth?

One study has stated that UCA (umbilical cord accidents) account for the majority of stillbirths. While on the other hand, another study concludes that cord accidents only account for 2-4% of all stillbirth cases. Who would have ever thought that they'd be in that teeny tiny percentage? Not this girl. But somebody has to be.

The UCA research is the most intriguing to me, for obvious reasons, and I can't even get any straight answers that anyone is even TRYING to make strides in research or raise money for studies. I mean, I have run across a few prominent names in the professional realm of stillbirth, but its just not satisfying.  I , as a mother of one healthy baby carrying her second child, was unaware that UCA usually occur when the mother is sleeping or that more tests could be ran (that insurance probably doesn't pay for) to insure all health of the baby is good. Hello, people, why are we in the dark on this issue?

See what I mean about the research? It's conflicting. Its sad. and Its not enough.



The simple topic of stillbirth is almost forbidden in our society; we have a tendency to pretend it doesn’t happen, so we don’t talk about it. This has to change. Tens of thousands of families endure the pain and trauma of stillbirth every year, and until we, as a society, acknowledge this and talk openly about it, medical professionals, family, friends and patients will remain ill-equipped when it comes to helping their loved ones.

Okay, so say there was no way for me to know that something was wrong and no way to stop the unthinkable from happening. There was still so much more that could have been done to prepare me for the unexpected. Reading materials. Discussions in the doctor's office. Posters. Articles. None of this was pushed on me. I'm sure I could have found the information if I had searched for it,  but why would I? The thought that I would not leave the hospital with my son at 38 weeks never crossed my overjoyed mommy mind. I might have scoffed or rolled my eyes at the mention of stillbirth before it happened to me, but I highly doubt it. I would have been intrigued, thirsty for knowledge; because that's what pregnant women do. They strive to prepare in every way for their newborns. We plan for the future in more ways than simply decorating a nursery or buying tiny clothes. We wonder what we would do if our baby was born with Down's Syndrome or any other conditions. We strive to think positively, while still entertaining the negative thoughts. You would be crazy to live in a world where you thought nothing bad could ever happen- to you. It's important to hope for the best, but plan for the worst.

In my opinion, medical professionals need more training in not only the health care aspects of stillbirth cases,  but the emotional support as well. More comprehensive protocols would be beneficial in easing the trauma and help to prepare those involved to make the short and long term decisions that face them during stillbirth events. Everyone seemed afraid to tell me what I needed to do. No one wanted to address the big elephant in the room. It shouldn't be that way. Nurses, therapists, and other health care professionals need more grief training and should be prepared to handle any such situation with grace and tact. With that said, my care was far from horrible, but I believe more could have been said and done to help us with our circumstances.

Phew.

Yes, I'm becoming THAT advocate. The one who only does something about a matter AFTER it has affected her life in some way. I only wish someone had done the same for me, and opened my eyes to the scary nightmare that became my reality. I guess I'm simply just hoping that by talking and writing about stillbirth that the ugly stigma will be erased and that someday, someone will benefit in some small way by acquiring knowledge on the topic. Knowledge that was freely and sincerely provided to them by a doctor, a friend, a family member, or a complete stranger.

  I challenge you to go to YouTube or Google and type that daunting word into the search box. Read a little. Cry a little. Learn a little. Help a little.

To get you started:
UCA