My dear friend Renee has a saying that is so apt, “Common sense isn’t very common”.
The first time she said this, we both busted out in laughter and shook our heads at whatever crazy occurrence had just transpired. Since that time, I have said to myself time and time again regarding various occurrences, “Common sense isn’t very common.”
But when I see the lack of common sense in medicine and science it really gives me pause. I recently got a MedScape alert in my e-mail inbox entitled, “Prenatal Diagnosis: What About the Mother?”, and it was a short video commentary by Jack Rychik, MD, Director of the Fetal Heart Program at the Cardiac Center of the Children’s Hospital of Philadelphia. Dr. Rychik was explaining how medicine has progressed to where we can now make diagnoses of congenital heart abnormalities in fetuses as early as 14-16 weeks. In his video he states,
“Making the diagnosis of congenital heart disease before birth provides multiple benefits. We can offer education to families. We can, most importantly, make a plan. When these babies come to term and they are ready for delivery, medication, care, and management can be offered to optimize the overall outcome for these patients.”
Dr. Rychik goes on to say.
“What we have appreciated of late is that, by offering these fetal echocardiography services and making a diagnosis [of congenital heart disease], we create a potential for maternal stress. In essence, these are mothers who have been given this diagnosis in their fetus but then there are months that elapse before actual management takes place. This is a period of time with potential for significant stress.”
At the risk of seeming snide, can we all give a collective, “Duh!” How can one not realize that if you tell a mother that there is something wrong with her child, she is going to be upset? How can one not realize that if you tell a pregnant mama that there is something wrong (and as serious as a congenital heart abnormality) with her unborn child, that she’s going to be upset? When I read his statement, “we have appreciated of late…” Really?? You’re just getting this?? Once again, common sense isn’t very common.
I am as appreciative as the next person of the advances that have been made in science and technology that enable advances in diagnosis and treatment in medicine. But I am even more concerned that medicine and science have forgotten that for all their ease of knowledge and function, technology and science are being used on and for people. Medicine and science are not just fascinating and interesting disciplines. At their core, and I am speaking specifically about medicine here, they are about improving the human condition. Medicine is (or should be) about making people feel better, easing their pain and restoring them to a state of good health. This should always be the guiding principle whether we are talking about improving the lifestyle of a diabetic, improving mobility and function in a paraplegic or making an early diagnosis and treatment plan for a pregnant mama and her unborn baby. To forget the human element in favor of medical science is a travesty. We cannot lose the human element to medicine.
When I first started Mamas on Bedrest & Beyond, I was (and continue to be) adamant that the focus be on mamas. So often with obstetrics and pregnancy the focus shifts to the baby and mamas seem to be relegated to ‘gestational carriers’. While I don’t believe that any obstetrician or women’s health care provider ever intends for this to happen, many mamas begin to feel secondary within their pregnancies and this becomes even more pronounced when the pregnancy becomes high risk.
The goal with Mamas on Bedrest & Beyond has always been to be a support and resource for mamas. For mamas locally, that can mean home visits to perform personal care services such as grocery shopping, running errands, light housekeeping, etc… For mamas online, that means support via answering questions, social interaction, workshops and webinars and teleseminars. Having had 2 high risk pregnancies, I know what it feels like to be spoken of in the third person or to have the baby and pregnancy made tantamount with you feeling as if you’re “just there”. We know that you are doing the absolute best that you can and our goal is to provide as many tools and resources as possible so that you can continue your pregnancy as far along as possible.
The Topic: Infant Mortality Awareness: Saving OUR Babies.
Many birth workers are talking about the alarming infant mortality rates in this country, but none are talking about infant mortality in the Black Community. That’s where this Blog Carnival comes in. We will talk about statistics, try to figure out why, and most importantly what we can do to help lower our infant mortality rates. This post will be updated with live links linking back to the other participants posts
I have a real thing for little brown babies. Having had two of my own, I can honestly say that they are the most precious (and most beautiful) beings in the world to me. Having also lost two pregnancies, sadly I also know the pain of losing precious souls.
It’s hard to believe that the United States has one of the higher infant mortality rates in the world, with African American babies dying at nearly 2-3 times the rate of White and Latino infants. According to the Office of Minority Health, a unit within the US Department of Health and Human Services,
African Americans have 2.3 times the infant mortality rate as non-Hispanic whites. They are three times as likely to die as infants due to complications related to low birth weight as compared to non-Hispanic white infants.
- African Americans had twice the sudden infant death syndrome mortality rate as non-Hispanic whites, in 2008.
- African American mothers were 2.3 times more likely than non-Hispanic white mothers to begin prenatal care in the 3rd trimester, or not receive prenatal care at all.
- The infant mortality rate for African American mothers with over 13 years of education was almost three times that of Non-Hispanic White mothers in 2005.
The OMH website goes on to list all the data from the US Centers for Disease Control and Prevention regarding infant mortality in the United States. At all indices, African American infants fare far worse than their White or Latino counterparts.
The statistics are alarming, yet I encourage you to read through them. I believe that change in the African American community-whether it’s regarding infant mortality, maternal mortality, health care delivery disparities, crime, homicide or anything else-is going to have to be an inside job. It is all well and good for university researchers to study what is going on in African American communities. It is fine if news outlets want to report on activities going on in African American communities. But little to none of these analyses makes one hill of beans difference if they are doing nothing to change the situation on the ground, and by my observations they aren’t doing much. Raising awareness is good but action is imperative.
I recently wrote a blog post called, Mamas on Bedrest: I’m Pro-Action! It engendered a lot of controversy because people felt that I was politicizing birth, bringing in the Pro-Life/Pro-Choice debate. I’ll admit that I chose the term “Pro-Action” as an attention grabber, but the meaning I’ve placed behind it is entirely different.
“Pro-Action” is a term that I believe we all have to embrace. So often in our culture, we vent “righteous indignation” over one thing or another, yet we fail to act on our beliefs. I believe failure to act is in large part responsible for the demise of our communities and our culture. Being “Pro-Action” means putting movement behind the lip service and working to effect change.
After reading the statistics on infant mortality in African American infants, you might sit back with a feeling of helplessness and hopelessness. It is a daunting problem and one that as individuals cannot possibly tackle effectively. But as individuals in collective, we can make an enormous impact. So how does one become “Pro-Action”? What does that look like when working to curb infant mortality?
- It’s working within your immediate neighborhood, community or congregation to assist mothers who are pregnant. Perhaps you give them a ride to their prenatal visits or watch their children so that they make it to visits unencumbered (we all know that even pregnant, you can move faster without the little ones along!).
- If mamas are on bed rest (my particular soft spot), it’s going by their homes and making sure that they have healthy meals and groceries, making sure that they are comfortable, talking to them, reassuring them, helping around their homes and with their children and family responsibilities.
- It’s talking openly and honestly to teenagers about sex and contraception. Let’s face it, the “sex outside of marriage is a sin” speech ain’t workin’ and hasn’t worked for decades. I think it’s time for a new approach (just my opinion here).
- It’s educating teen-aged girls about why teen pregnancy is not a good idea. Again, address not only the moral arguments, but also address the concrete data in the medical literature that clearly shows that teenagers have higher rates of maternal and infant mortality. Contrary to popular beliefs, pregnancy is not a benign condition. Many things can and do go wrong and they tend to go wrong in the extremes-amongst young girls under 20 and women over 40.
- It’s grassroots organization like Mamas of Color Rising here in Austin, TX. This group of low income African American and Latina mamas has come together to train birth attendants of color to be with mamas of color as they labor and deliver. They are supporting and training midwives of color who will attend births of low income mamas of color. They have lobbied for and are on the crest of seeing rules changes in the Medicaid laws of Texas such that Midwives will be able to care for and attend to pregnant women on Medicaid and be reimbursed for their services. And in just mere weeks, this dynamic group of mamas will see the grand opening of a free prenatal clinic for low income women of color who will be able to receive prenatal care in the midwifery model. Yes, these mamas are definitely “Pro-Action”!
I could go on and on, but I think you get the picture. Pick an area that pricks your heart and then Take Action! Get out and get involved. If each one of us becomes involved in each of our respective communities, soon, our efforts and our reach will coalesce and we’ll find that we are one large collective effecting change on a grand scale.
This Blog Carnival is once such example of change in action. Let’s keep the ball rolling and all be “Pro-Action” for our mamas, our babies and our communities.
Other Posts in this Carnival
Health Programming and It’s Impact on Black Infant Mortality-By Amy Hereford
Black Infant Mortality and Your Responsibility. By Darcel of The Mahogany Way Birth Cafe
Stop The Talking…Implement Solutions! By SistaMidwife Productions
The first was on June 25, 2001 at just 6 weeks. The second was on November 1, 2004 at just shy of 10 weeks. By all accounts the pregnancies were not going to be viable, and each “fetal demise” occurred before 12 weeks. Yet, in my mind, I have lost two children and no one can convince me otherwise.
I realize that my early losses pale in comparison to mamas who have lost children much later in their pregnancies, at birth or shortly after birth. But a loss is a loss it must be honored.
There are no words to describe losing a child. It is a gut wrenching experience and one that you never forget. Even though I had my “children” for only a few short weeks each, for each precious soul I had hopes, dreams, ideas and plans. To have those hopes and dreams abruptly end was devastating.
The one thing that I regret with my losses is that I never properly mourned them. Because my losses were so early on, people tended to view them as insignificant. I was told things like,
“Well, it wasn’t really a baby yet” or
“Obviously it wasn’t meant to be, so be thankful that it didn’t progress and that you didn’t end up with a handicapped or deformed child.”
While I wholeheartedly acknowledge that people were trying, in their very uneducated and ill-equipped way to put a positive spin on my situation, yet their words stung and only further depressed me. I now realize in hindsight that I had post partum depression (most notably after my second loss), and my struggle to simply cope lead to my husband and I just never mentioning the loss at all. To this day, we have never discussed the losses of our children and the impact that it had on each of our individual lives and on our relationship and family.
Mourning the loss of a child-regardless of the (gestational) age-is one of THE most difficult things a mama may ever do. But it is hugely important to recognize that child. What I didn’t know at the time of my losses and what was never offered to me was support for my loss. There are numerous agencies and organizations that support parents grieving the loss of a child. Because I lost my children so early and because of many of the comments I received, I didn’t feel that I had a right to mourn the loss of my babies. But no matter how early or late your loss, you have the right and the need to grieve and mourn. Below are but a few organizations that I know of that support pregnancy and infant loss. This list is by no means exhaustive, but if you have experienced a loss and need help with grief, you can at least start here.
Share Pregnancy and Infant Loss Support, Inc. The mission of Share Pregnancy and Infant Loss Support, Inc. is to serve those whose lives are touched by the tragic death of a baby through pregnancy loss, stillbirth or in the first few months of life. The secondary purpose of Share is to provide information, education, and resources on the needs and rights of bereaved parents and siblings, enabling more effective family and community support.
Healing Hearts Baby Loss Comfort-Healing Hearts Baby Loss Comfort was created in response to the reality that some pregnancies do not end happily. Healing Hearts Baby Loss Comfort is a place for women to feel comfortable looking for real, physical comfort, herbal remedies and spiritual nurturing, as well as a space to find resources, honor their grief and express their loss. It is also a place for those looking to support someone who has lost a baby.
Before I close, I want to draw particular attention to the organization, Now I Lay Me Down to Sleep. This organization provides photographs of the precious souls that have gone on to heaven for their parents and loved ones.
When I first learned about this organization, my initial thought was, “Eeeww!” But parents with whom I have spoken who have utilized the service say that having a photo of their child, naming the child and acknowledging the life of the child-however short-helped them tremendously! The photographs are exquisitely done and the parents may choose photos of the child alone or photos holding the child. For so many parents, having the opportunity to hold their child and have a family photo is priceless and solidifies the child as a member of the family. While this resource may not be for everyone, those families I’ve spoken to who have utilized the service say that the tangible memory that they now have of their child is priceless.
Pregnancy loss is a heartbreaking reality for many couples. But it is not something that should be passed over or minimized. That child, that soul, was a part of you and came into you life for a reason. The reason may not be immediately clear and most certainly the loss may never make sense to you, but there is a reason. It is important that you honor yourselves as parents and honor, in whatever way is best for you, the life of your child.
September is National Infant Mortality Awareness Month and we’re celebrating the lives of our “Precious Souls in Heaven”
I”ll Hold You In Heaven By Jack Hayford A great book for grieving Parents.