Posts Tagged ‘ infant death ’

Prenatal Genetic Testing

Hi all! My name is Katherine Brown and I am the summer intern here NHSA. I have an interest in the genetic field, specifically with the prenatal aspect and advocating for prenatal screening/testing, which all relate to what we promote and advocate here at NHSA.Katherine headshot2

Most of the projects being implemented at NHSA revolve around building educational skills to be healthy before pregnancy, during pregnancy, and in between pregnancies. These interventions are vital considering the U.S. statistics on infant mortality rates are nothing to brag about. In fact, according to Save the Children’s State of the World’s Mothers report, every year twice the numbers of babies die on their first day alive than all 27 European Union nation combined. And get this: 1 million more babies are born there compared to the U.S! This is why NHSA supports the Federal Healthy Start Initiative and developed Celebrate day 366…Every Baby Deserves a Chance, and why prenatal screenings/testing need to be promoted to increase the chance of celebrating Day 366!

Genomic medicine has grown tremendously within the last couples of years. Prenatal testing can detect your baby’s health and growth before it is even born. Prenatal testing also tests how the mother is during throughout pregnancy. It is a win-win situation for both! We now have tests, mentioned in the March of Dimes article posted below, that can tell early within your pregnancy (within the first trimester) if your child may have any genetic conditions like Down syndrome, heart defects, birth defects, or cystic fibrosis. It is extremely important to continue prenatal testing throughout the pregnancy to understand how you and the baby are growing. For example sometimes mothers will acquire gestational diabetes during second trimester and prenatal screening can detect that. During your third trimester most screenings will test for group B strep that a mother can acquire and then pass down to her baby. It is also important to know your own family history of disease or what your specific ethnicity may be more prone to, i.e. cystic fibrosis or sickle cell anemia, before planning to have a child. Make a list of all cancers, genetic disorders, mental illnesses, etc. shown to have affected your family tree and take it to a genetic counselor that will take time to talk with you and discuss options for conceiving the healthiest child possible.

The importance of having all of these factors detected before giving birth is that prevention or treatment can start immediately which means a longer and better quality of life for your child.

If you would like more information on genetic counseling or prenatal testing, please check out the links below.

  1. http://www.marchofdimes.com/pregnancy/prenatal-tests.aspx

 

  1. http://www.genome.gov/Pages/Health/PatientsPublicInfo/GeneticTestingWhatItMeansForYourHealth.pdf

 

  1. http://www.nlm.nih.gov/medlineplus/prenataltesting.html

 

 

 

 

We Did What We Set Out To Do

As the month closes, I am proud to say that we accomplished our goal — to increase awareness around infant mortality. We tried new communication vehicles like Twitter to get the word out, we spotlighted guest bloggers to tell us how they felt about the issue, and we created new materials to help others spread the message. Our commitment this year was to do more than what we did last year and the year before to educate the public about an issue that effects each and every one of us. Someone said yesterday that it doesn’t matter if you have children or not, infant mortality has an impact on all of us. It is very true. You may have a friend, family member, or colleague who has experienced the loss of their baby. You share in their pain, you grieve for their loss. In the end, it has affected you. I know I said it at the beginning of the month, but I will say it again – the health of a nation is often determined by their infant mortality rate. When babies die, our communities suffer, as does the country. When babies die, the mental health and well-being of a family can be severely impacted. When babies die, we lose the potential for greatness in a child who could be the next mathematician, doctor, community organizer or engineer. That is why the work we all did this month must not stop here.

Yes, September will be gone tomorrow, but infant mortality awareness is a year-round issue. I urge you to continue your efforts over the next 11 months and be even more vigilant in your fight to reduce infant deaths. When the next “awareness” month rolls around, National Infant Mortality Awareness Month will be a thing of the past until 2012. But we know how critically important it is that we keep this as an issue of today and every day. Our commitment to families must remain steadfast 365 days a year so that EVERY baby gets to reach day 366!

~Stacey Cunningham, Executive Director, NHSA

What is the test of a good and strong society?

Jon Terry is the NHSA Government Relations Consultant and President of Capitol Youth Strategies LLC.

“I believe the test of a good and strong society is how we look after the most vulnerable, the most frail and the poorest.  That’s true in good times, but it’s even more true in difficult times.”

This quote from David Cameron, Prime Minister of the UK, immediately came to mind when I was asked why it is important to raise awareness about infant mortality.  Regardless of the economic climate or the state of the current fiscal mess in Washington, D.C., we have a responsibility to care for the most vulnerable in our society.  At the top of the ‘most vulnerable list’ are disadvantaged mothers and babies who need basic health services and access to prevention programs.

The bad news is that the United States ranks a dismal 41st when compared to other industrialized nations’ infant mortality rate.  In the United States, African American infants are 2.4 times as likely as white infants to die before their first birthday.  These deaths are especially tragic because they are so preventable.

The good news is that we know what works at preventing infant mortality and making sure babies live to see their first birthday. Services such as outreach, home visitation, case management, health education, perinatal depression screening, interconceptional care and other approaches are all effective at improving birth outcomes. These types of community-based services will not only save lives, but also save billions of dollars in health care costs.

Caring for disadvantaged mothers and babies is certainly a test of whether our society is good and strong.  It’s a test that we can’t afford to fail.

Infants Can’t Advocate

Dana Baker Kaplin, First Candle, answers the question, “Why is it important to raise awareness about infant mortality?”

Infants and children are unique members of our society in many ways. The most significant distinction, in my view, is that they make up the only segment of our population that is completely unable to advocate for themselves.

On the other hand, many adults face considerable challenges such as loss of a job, divorce, or managing a chronic illness during their lifetime. In these instances, they must take action or advocate for themselves to make change occur.  Those with the capacity to advocate for themselves or on behalf of a particular cause are capable of improving or overcoming challenges. Infants do not have this capacity.

I believe that it is not only important that we raise awareness about infant mortality–it is our responsibility as conscientious and caring members of society.  How do we do this? By educating parents and providers, conducting research that may improve birth outcomes, informing legislators about the significance of infant mortality and the need for funding, involvement in public health education or in other ways.

Having worked in the maternal and child health field for many years, I know at times “addressing infant mortality” can be overwhelming because of such high infant mortality rates and the vast racial disparities that exist.  However, this September, in honor of Infant Mortality Awareness Month it is crucial that we all commit to some action that will raise awareness about the urgent need at address infant mortality in our own communities and beyond.

We wouldn’t accept 41st place in the Olympics

Mike Fraser is the CEO of the Association of Maternal & Child Health Programs.

Infant mortality is one of the key indicators of a society’s health – and the US isn’t doing that great compared to our sister countries around the world. A recent WHO report found that the US ranks 41st in the world. 41st?  Aren’t we a country of #1s and gold medals?  Why do we accept 41st place among all nations on this critical measure of how well we care for women, children, and families? I think it is primarily because we haven’t made infant mortality as big of an issue as it really should be. Most Americans don’t know we rank 41st. Most Americans don’t know that compared to other countries, we have a long way to go in improving our rates. Would we accept 41st place in the Olympics? Heck no.  Why do we accept it for our children?

Raising infant mortality awareness is key to obtaining more support to address the problem. That is why September’s infant mortality awareness activities are so important. Raising the issue in policy circles is helpful, getting our friends and families talking to policy makers about this issue is even better. The more we can let our representatives know that we don’t want to be 41st anymore the more pressure they will feel to do something about it. There is a lot we can do to address infant mortality – we know what some of the major causes are, and we have a good toolkit of solutions, but resources to address this issue have been cut back, not increased. We also know that there is a great deal more states and their partners can do to help communities address this important problem. We all need to be part of the solution.  That’s why we are encouraging everyone to get active this month – and after – in raising awareness and bringing attention to this important MCH issue.

Learning to Count Dead Babies

Kathryn Hall-Trujillo, Director, Birthing Project USA: The Underground Railroad for New Life, answers, “Why do you feel it is important to raise awareness around infant mortality?”

DeAndre lived ten days, and in his birth, short life and death…he taught me that Infant Mortality Rate means “counting dead babies”.  During the last century, the US counted more dead babies than all the soldiers we lost in World War I, World War II, Korea and Vietnam. DeAndre also taught me that each life brings the gift of knowledge. If we pay attention, we can learn something. In his case, along with the reality of death, he taught me that even though he was another woman’s child…he was also my child and the child of every woman and man who have a sense of community and accountability to our ancestors and to our “yet to be born”.

As we remember the little ones who came and left us so quickly, I light a candle of remembrance that flickers with hope.  We do not have all the answers to keep them here as long as we would like but I believe that, as we raise awareness and take action by surrounding young parents with care, information, guidance and support, our babies have a better chance of being born as healthy as possible to parents who are prepared to love and care for them.

View our Pilgramadge  to BabyLand at Birthing Project USA You Tube Channel

 

http://www.youtube.com/user/BirthingProjectUSA

Saving Babies

Elizabeth Perry, Executive Assistant/Communications Associate for NHSA, on how she learned about infant mortality.

In D.C., the first question after you’re introduced to a new person is, “And what do you do?” The standard answer is the name of your company, what the company does and your role in the company….which results in a glazed looking head-bob from the questioner. Since I began at NHSA, I’ve had a simpler and more direct response, “I save babies.”

I didn’t set out in this job to save babies. That may sound funny, since I obviously knew where I was working, but it’s absolute truth. You see, I’m the only staff member WITHOUT a background in MCH. In fact, I couldn’t have told you what MCH stood for on my first day. (It’s Maternal and Child Health, for those stumbling blindly across this blog.) My background in women’s health focused on women, but I didn’t know much about infants and pregnancy. I learned, and I learned quickly.

I began reading about the work of Healthy Start, and the incredibly tragic need for more of the work. How could so many babies be dying before the age of one? While I’ve never experienced pregnancy, I’ve sympathized deeply with friends who have miscarried. I’ve seen the loss and the grieving they’ve done for a child they never held. As I read more about the infant mortality rates in this country and around the world, I couldn’t imagine the depth of loss experienced by those who’ve given birth and lost their child.

Working at NHSA has been my introduction into the tragedy that is the IMR in this country. I’ve learned about babies dying in alarming numbers, and I’ve learned that babies of color die much more often than white babies. I’ve been horrified by the statistics and moved by the stories I’ve heard from women and men who persevere in making their families healthier.

I’m not a case worker or nurse or family therapist; these skills are outside of my abilities. But I do have skills. We all do. I choose every day to use my skills to spread awareness about the epidemic that is infant mortality in this country and to advocate on behalf of those working in the field. I choose to spread the word about infant mortality, because if babies are dying, we should be doing something to stop it.

I urge you to use your skills or your voice to spread the message that infant mortality is real in this country; babies are dying, and we MUST do more to educate people. If you pass the message on, when someone asks what you do, you can say, “I save babies” too.