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Critical Congenital Heart Defect Screening – A Simple Newborn Test that Saves Lives

April 24th, 2014 by avatar

 By Elias Kass, ND, CPM, LM

© Tammi Johnson

© Tammi Johnson

Critical Congenital Heart Defect screening can help identify and save the lives of newborns born with previously undetected but serious malformations of the heart that can significantly impact them as they transition to life on the outside.  Families can learn about the simple screening procedure in a childbirth education class and be prepared to discuss the screening with their health care providers.  Dr. Elias Kass, naturopath and midwife, shares information on the screening, stats on the incidence of CCHDs and how you can help spread the word on the importance of all newborns being screened. – Sharon Muza, Community Manager, Science & Sensibility 

There’s a new newborn screening being implemented in many birth settings – critical congenital heart defect screening, or CCHD. What is this screening? What does it look for, and how can you educate and prepare your childbirth education students for the screening and possible results?

Critical congenital heart defects refer to heart defects that babies are born with and that require surgical intervention within the first month (or year, depending on the defining organization). About 1 in 100 babies have heart defects (1%), and about 1 in 4 of those with a heart defect have a defect so severe that it needs to be corrected immediately (0.25% of all babies) Only some of these defects will be picked up by prenatal ultrasound, and they may not show up on exam before the baby goes home (or the midwife leaves in the case of a home birth). Depending on the defect, some babies may be able to compensate with structures that were in place during the fetal period but begin to go away after the baby is born.

Fetal circulation and changes after birth

By KellyPhD (Own work) [CC-BY-SA-3.0], via Wikimedia Commons

By KellyPhD (Own work) [CC-BY-SA-3.0], via Wikimedia Commons

Because a fetus receives oxygen through the placenta and umbilical cord, there’s no need for him to send a significant amount of blood to the lungs, so a fetus has very different heart and lung circulation than they will after making the transition to life on the outside. One of the big differences (simplified for this article) is the ductus arteriosis – this is a bypass that takes blood from the pulmonary artery and provides a shortcut to the aorta, instead of continuing on to the lungs. Another big difference is the foramen ovale – this is an oval-shaped window between the right atrium and left atrium, which allows blood to bypass being pumped out to the lungs entirely. After birth, pressure changes cause massive changes in flow. Pressure increases in the left atrium cause a flap to slam shut across the foramen ovale. Blood also finds it easier to flow to the lungs, so less blood flows through the ductus arteriosus. Over the course of days and weeks, the foramen ovale seals shut and the ductus arteriosus starts to shrivel.

Typically blood being pumped out to the body is loaded with oxygen. If there are structural problems, it’s possible that this blood would be a mix of oxygenated and deoxygenated blood – there would be less oxygen available in this blood, but at least it’s getting out to the body. Sometimes those fetal structures are what allows that mixed blood to circulate. So what if the baby was really depending on those shortcuts and bypasses? And then the shortcuts and bypasses go away? These babies may look well and do fine, until the fetal structures start to go away.

This March of Dimes article describes seven conditions considered to be part of CCHD:

  1. Hypoplastic left heart syndrome (also called HLHS)
  2. Pulmonary atresia (also called PA)
  3. Tetralogy of Fallot (also called TOF)
  4. Total anomalous pulmonary venous return (also called TAPV or TAPVR)
  5. Transposition of the great arteries (also called TGA)
  6. Tricuspid atresia (also called TA)
  7. Truncus arteriosis

See page for author [GFDL or CC-BY-SA-3.0], via Wikimedia Commons

Circulation after birth [GFDL or CC-BY-SA-3.0], via Wikimedia Commons

CCHD screening of the newborn is intended to catch babies who might need intervention, before they decompensate and their heart defects are made obvious.

The screening process

CCHD screening involves using a pulse oximeter at two locations — the right hand (or wrist), and either foot. The right arm receives its blood supply before the ductus arteriosus enters the aorta, so it’s known as “pre-ductal.” The left hand and the lower body receive “post-ductal” blood.

The pulse oximeter senses oxygen saturation by shining light through the skin. Red blood cells that are loaded with oxygen deflect light differently than red blood cells without oxygen. The opposite sensor collects the light and calculates how much was lost. By using multiple wavelengths of light, the unit can isolate arterial flow and disregard venous flow (veins return blood to the heart after the tissues have ‘used’ the oxygen the blood was carrying). For babies, an adhesive probe is typically wrapped around the hand or wrist, and then around a foot. The thin strip might be covered with a foam band to help block out the room light. Some facilities use reusable probes that are more like clips. Not all pulse oximeters are well suited for this purpose – they need to be able to sense low saturations and not be confused by an infant’s constant motion.

There are three possible results from the screening – pass, fail, and an in between, or “try again.”

If a baby’s oxygen saturation is ≥ 95% in the right hand and foot, and there is less than a 3% difference between the two readings, then she passes the screening.

For a baby whose saturation is between 90-95%, or has a greater than 3% difference between the right hand and foot, the screening test is repeated in an hour. If she still doesn’t pass or fail, she can have one more chance. If she still doesn’t pass after three tries (one initial and two retries), that’s considered a fail, and she should be evaluated.

If a baby’s oxygen saturation is under 90% in either the right hand or foot, or she didn’t pass in three tries, this is considered a fail, or a positive screening. This baby should be referred to a pediatric cardiologist who can assess her and do an echocardiogram (ultrasound of the heart), and/or other workup. Depending on her health at the time, that might mean an immediate consult, or it might mean having her scheduled for a visit soon.

In Washington state, Seattle Children’s Hospital and the other regional pediatric cardiology groups are available to talk with the clinician who has a patient with a problematic screening and help figure out when and where the baby should be seen. If there is no local pediatric cardiology group, some cardiology groups can do telemetry or read studies remotely. Before implementing screening in their practice or facility, there should be a clear process for how to obtain consultation and referral (who should be called, how to contact them, how to transmit images if able, etc). Evaluation should be arranged before the baby is discharged because a baby’s condition can deteriorate rapidly.

There are tools available to help with this algorithm. The Center for Disease Control and Prevention (CDC) has a flow chart to help guide the screening process, and Children’s Health Care of Atlanta has a web site and Pulse Ox Tool app to help guide providers.

When should the screening be done?

The screening should be done between 24-48 hours after birth. Before 24 hours, there is an increased incidence of false positives, but a baby who passes before 24 hours is still considered to have passed (i.e., it still “counts”). If a baby is being discharged before 24 hours, the recommendation is to do it as close to discharge as possible. For babies born at home, this screening should be done at the 24-48 hour home visit, along with the metabolic screening. For the screening to be most accurate, baby should be awake and calm, but not feeding. (Feeding causes some decrease in oxygen saturation even in normal term newborns.)

What about a failed screen?

It’s helpful to know that not all babies with a failed screen have a critical congenital heart defect. Like all screening tools, this screening has false positives. The false positive rate overall is about 1/200 (0.5%), but it falls to 1/2000 (.05%) when the screening is performed after 24 hours of age according to the FAQ on the Seattle Children’s Hospital Pulse Oximetry Screening for Newborns resource page for providers. About a quarter of the babies who fail the screening truly have a Critical Congenital Heart Defect(true positive), while half have condition that causes low blood oxygen, like pneumonia and sepsis, and a quarter are well (false positive).

Who should be screened?

All babies should be screened, unless the baby is already known to have a critical congenital heart defect, identified during ultrasounds done during the pregnancy or immediately after birth. Most states mandate screening – 31 by legislation and one by executive order. An additional six states have regulations or guidance. In states without mandated screenings, most birth settings have adopted the screening, but not all. For some settings there are logistical challenges in terms of purchasing equipment (particularly independent midwives who might not have other use for the pulse oximeter, although since it was recommended to be used as part of neonatal resuscitation that has begun to change), arranging for consultation (particularly in rural areas or regions without adequate pediatric cardiology support), or logistical challenges in terms of who will do the screening and when. The Secretary of Health and Human Services (HHS) has recommended that CCHD screening be added to the newborn screening panel (like metabolic screening and hearing screening). The American Academy of Pediatrics also supports the universal adoption of this screening.

Cost can be a barrier in offering this screening. There is currently no procedure (CPT) code for this screening, and insurance companies are generally bundling it into the general newborn care (and not reimbursing for it as a separate service), though there are groups working to change this, since there is significant up-front investment and on-going costs in terms of probes and staff time to provide the screening. Most appropriate pulse oximeters start at $500 and the disposable probes around $3-5. Using reusable probes can decrease the cost of providing this screening.

If the hospital or midwife doesn’t provide this screening, parents can ask their pediatric provider to perform the screening at the baby’s first office visit. The goal is to catch these conditions as quickly as possible, ideally before the baby’s condition decompensates. Getting a screening a little later is better than not getting it at all.The screening is no less accurate later on.

The childbirth educator perspective

As a childbirth educator, you can share information about this quick screening test, when you discuss other newborn care procedures. You can encourage your students to ask their midwife or doctor about the screening, or ask on the hospital tour. If the hospital or health care provider hasn’t yet implemented this screening, families can ask why not, and if there’s anyone they can talk to encourage implementation. Facilities and providers should hear from families that they know about this screening and expect it as part of their newborn’s care.  Universal screening will go a long way to identifying those children who were not previously diagnosed with a Critical Congenital Heart Defect and who can begin to receive care for the CCHD as soon as possible by pediatric cardiologists.  Your childbirth class may be the only opportunity for these families to hear about and understand the importance of the CCHD screening test.

Are you already talking about this screening test for CCHD in your classes? If not, might you begin to share this information as a result of what you learned today?  Are providers and facilities in your area already offering this test as part of normal newborn screening? Do you know any families who have had this screening and their baby was diagnosed with an heart defect? Share your experiences in our comments and let’s discuss.- SM

References and Resources

March of Dimes, with general information about CCHD screening targeted towards families
American Academy of Pediatrics - detailed information about screening and implementation, targeted towards providers and facilities
Dr. Amy Schultz (a pediatric cardiologist at Seattle Children’s) frequently presents on CCHD screening – this presentation, with detailed information about critical congenital heart defects and screening, was recorded and can be streamed online

About Dr. Elias Kass

elias kass head shot

Elias Kass, ND, LM, CPM

Elias Kass, ND, LM, CPM, is a naturopathic physician and licensed midwife practicing as part of One Sky Family Medicine in Seattle, Washington. He provides integrative family primary care for children and their parents, including prenatal, birth and pediatric care. He loves working with babies! Practice information and Dr Kass’s contact info is available at One Sky Family Medicine.

Babies, Childbirth Education, Guest Posts, Neonatology, Newborns , , , , ,

January is National Birth Defects Prevention Month – Are Your Resources & Information Up to Date?

January 21st, 2014 by avatar
image: NDBPN.org

image: NDBPN.org

January is National Birth Defects Prevention Month, and this year the campaign being presented is that birth defects are “Costly, Common and Critical.”  This campaign is sponsored by the non-profit organization National Birth Defects Prevention Network (NBDPN). The NBDPN is a volunteer-based collaborative non-profit that works to capture national statistics on the numbers and types of birth defects occurring in the USA, along with coordinating research and prevention efforts.  This multi-disciplinary organization is made up of public health officials, consumers and researchers working together to reduce birth defects and their short and long term consequences. They collaborate with the Center for Disease Control and Prevention and March of Dimes as well as other well known organizations and agencies.

image: NBDPN.org

image: NBDPN.org

One in 33 babies born are affected by a birth defect.  A baby with a birth defect is born every 4 1/2 minutes in the USA and these defects are responsible for one in five infant deaths. Not all birth defects are detected prior to birth, though many are identified during an ultrasound or amniocentesis.  There are some birth defects that are not detected before the newborn leaves the hospital. All birth defects are not related to genetics, some occur randomly during fetal development and others are a result of circumstances during pregnancy. Total hospital costs of children with birth defects exceed $2.6 billion. Congenital cardiac and circulatory birth defects account for $1.4 billion of these annual hospital costs.  Defects of the heart and limbs are the most common kind of birth defects. Only reasons for 30% of birth defects are known, but ongoing research is working towards identifying the unknown causes.

If you are an educator or a provider who offers a preconception class, your class is a great opportunity to share some of the resources on birth defect prevention, so that women and their partners can do what they can to reduce the likelihood of having a child with a birth defect.  That includes a discussion about getting enough folic acid, having regular medical checkups,  making sure medical conditions, such as diabetes, are under control, testing for infectious diseases and being up to date on vaccinations. Also avoiding cigarettes, alcohol and other drugs.

image: NBDPN.org

image: NBDPN.org

The NBDPN provides information and fact sheets on a variety of topics for consumers in both English and Spanish, as well as webinars that appeal to professionals, health care providers and researchers. They are also holding a virtual conference beginning in late February, that you can attend.

If you are not a health care provider, you may not know that a family in your class is carrying a baby with a birth defect.  They may disclose this information to the class, they may share with you privately or they may say nothing.  They might not even know themselves at the time.  It is imperative that you have resources available should they ask.  You may find out after the baby is born if class members stays in touch with you or there is a class reunion.  Your families may look to you for information and support.

Resources for your students and their families

Families you work with may also appreciate referrals to counselors, therapists and local support groups, to help them deal with the emotions and stress of having a baby with a birth defect, who may spend time in the NICU and be facing significant medical care, treatment and surgeries in the future.  Having a comprehensive list prepared in advance, with the appropriate local resources, will be helpful should you have a this situation.

As childbirth educators and other professionals working with an expectant family, we have an obligation to help prepare families for when things do not always go as planned.  The relationships we develop with families during the vulnerable year of pregnancy, birth and postpartum makes our role very important in helping families be ready for whatever comes.

Have you had a family in your class who delivered a baby with birth defects? Did they let you know about the circumstances?  Before or after birth? What did you do to help this family be prepared?  What resources did they find valuable?How did this affect what you said or did in your childbirth education course? Please sensitively share your experiences with our readers in the comments section so we can all be better prepared for supporting families whose child had a birth defect and their journey did not go as planned.

Babies, Childbirth Education, Newborns, Research , , , , , , , ,

Ten Facts on the State of Premature Birth – Honoring World Prematurity Day

November 19th, 2013 by avatar

November 17th is recognized as World Prematurity Day and many maternal-infant health organizations share research, blog posts, information, fact sheets, videos and other resources on the topic to be used by professionals and consumers alike. The purpose of the  international effort has been to focus on the the impact that premature birth has on the babies themselves, families and society.  This year marks the third annual event.

The four worlds into which 135 million newborns are born each year. © Born Too Soon: The Global Action Report on Preterm Birth.

Here are 10 facts about premature birth that you may not have known:

1. 15 million babies are born prematurely every year out of the 135 million babies worldwide. This number is equal to the entire population of Guatemala or Kazakhstan.

2. 1 million of those babies born early die due to prematurity and account for 1/3 of the world’s newborn deaths.

3. Boys are 14 percent more likely than girls to be born prematurely, and preterm boys have a greater risk of disability and death than preterm girls.  This may be because mothers are more likely to have pre-eclampsia, placental problems and gestational hypertension if they are carrying a boy.  These conditions are more likely to result in a preterm birth.

4. Preterm girls are more likely than boys to die in the first month of life in some countries where girls receive less nutrition and medical care than boys.

5. The USA has seen a 30 percent increase in preterm births in the past 20 years, reaching a high in 2006 at 12.8% of all births in the USA.

6. 450,000 babies in the USA are born too soon, around 1 out of 9 babies.  The USA has a prematurity rate that is higher than most other developed nations.

7. Three states, Louisiana, Mississippi and Alabama, along with Puerto Rico receive a grade of “F” for their prematurity rates; Preterm birth rate greater than or equal to 14.6%

8. In the United States, African-American and Native American babies have the highest neonatal death rate associated with prematurity.  Yet another unfortunate consequence of the health disparities and inequities that families of color face in the USA.another way that racial disparities and inequities in health care.

9. 10% of premature babies born before 28 weeks die in high-income countries, while 90% of premature babies born before 28 weeks die in low-income countries.

10. “Three quarters of the 1 million babies who die each year from complications associated with prematurity could have been saved with cost-effective interventions, even without intensive care facilities.” - UN Secretary General Ban Ki-moon.  These two interventions are antenatal steroids and Kangaroo Care.

Lamaze International is working alongside other national and international organizations to educate women about preterm births, how to identify premature labor and who is at risk.  In that vein, on Thursday, Lamaze International will reveal a brand new infographic here on the blog covering the topic of induction for professionals to use with their students, clients and patients.  Lamaze International is proud to be doing their part to help reduce needless newborn deaths and increase awareness on the topic.

Resources and References 

Every Newborn

Healthy Babies are Worth the Wait

HealthyChildren.org

March of Dimes

March of Dimes Prematurity Infographic

Lawn, Joy E., Blencowe, Hannah, Darmstadt, Garly L., Bhutta, Zulfigar A. Beyond newborn survival; the world you are born into determines your risk of disability-free survival.  Pediatric Research, International Pediatric Research Foundation, Inc. 2013/11/15.


 

Babies, Childbirth Education, Maternity Care, Newborns, Push for Your Baby , , , , ,

The Unexpected Project: Pre-eclampsia Researched, Revealed and Reviewed. Part II of an interview with Jennifer Carney

February 7th, 2013 by avatar

By: Walker Karraa

Regular contributor Walker Karraa wraps up her interview with Jennifer Carney, who became active with The Preeclampsia Foundation and the Unexpected Project after suffering from eclampsia while pregnant with her second child.  Have you had to answer any questions in your classes or with your clients and patients after the recent episode of Downton Abbey, where one of the characters developed eclampsia?  What have you shared with your pregnant families? Part one of Walker’s interview with Jennifer Carney can be found here. – Sharon Muza, Community Manager.  

Walker: What do you see are the common myths regarding pre-eclampsia?

JC: Common myths? Oh, there are so many. A lot of people seem to think they know what causes preeclampsia and how to cure it. There’s a whole faction of advocates who buy into the work of Dr. Tom Brewer, who in the 1960′s, devised a very high protein diet for mothers based on the idea that preeclampsia is caused by malnutrition. This isn’t supported by the current research, but it gets repeated all the time. Other people argue that preeclampsia is a so-called “lifestyle” disease – caused by obesity and poor prenatal care. Obesity is a risk factor, but it is only one of many and poor prenatal care can cause the disease to go undetected, but it will not cause it to happen in the first place. There are also a lot of people who think that the delivery of the baby will end the risk to the mother – and while it’s true that the removal of the placenta is essential, preeclampsia or eclampsia can still happen up to 6 weeks after delivery. There are other myths, but it strikes me that so many of these myths are rooted in a desire to control pregnancy. If we can blame preeclampsia on one central cause or on the women who develop it themselves, then we can reassure ourselves that we won’t develop it, too. There are risk factors that can increase a woman’s chances of developing the disease, but women without any known risk factors have developed it, too.

It’s not comforting to think that no one is safe, but with knowledge of the signs and symptoms – a woman can react to it promptly and receive the care that she needs. But this will only happen if women get the information and understand that it CAN happen to them. I am blown away by the ways in which preeclampsia and other serious complications are downplayed and dismissed in pregnancy books, online and even by some medical practitioners. Preeclampsia CAN happen to you – but you can deal with it IF you know the signs and the symptoms.

Walker: Can you share with our readers what you are doing with Anne Garrett Addison at The Unexpected Project?

JC: The Unexpected Project is a documentary, website, and book project that will examine the rate of maternal deaths and near-misses in the United States. Anne Garrett Addison, who founded the Preeclampsia Foundation, and I are both classified as near-misses due to preeclampsia. With Unexpected, we want to take a look at all maternal deaths regardless of the cause – preeclampsia, amniotic fluid embolism, hemorrhage, placenta previa, placental abruption, infection, suicide, and any other causes. We also want to look at the women who survived these complications because the line between surviving and dying is in these cases, often quite thin. Every case is different and there is no one factor to blame for the maternal death rate in the US. We will look at interventions and cesarean sections, but we will also look at the lack of information available to women and the tendency of some birth activists to minimize the dangers of serious birth complications.

Current Preeclampsia/Eclampsia StatisticsMaternal mortality and morbidity are, unfortunately, a part of the pregnancy and childbirth experience for women and their families in the US and the world.  While most (99%) of maternal mortalities occur in the developing world, the 1% that occur in developed countries like the US are still of concern to maternity care providers and advocates.  Indeed, U.S. still ranks 50th in the world for its maternal mortality rate (1).

More common than a maternal death, are severe short- or long-term morbidities due to obstetric complications (2).  Some estimate that unexpected complications occur in up to 15% of women who are otherwise healthy at term (2).  

In particular, hypertensive disorders of pregnancy, including elevated blood pressure, preeclampsia, eclampsia and HELLP syndrome are estimated to affect 12-22% of pregnant women and their babies worldwide each year. (3)  Adverse neonatal outcomes are higher for infants born to women with pregnancies complicated by hypertension.  

In the U.S., upwards of 8 percent or 300,000 pregnant or postpartum women develop preeclampsia or the related condition, HELLP syndrome each year. This number is growing as more women enter pregnancy already hypertensive (cite).  Preeclampsia is still a leading cause of pregnancy-related death in the US and one of the most preventable.  Annually, approximately 300 women die and another 75,000 women experience “near misses” – severe complications and injury such as organ failure, massive blood loss, permanent disability, and premature birth or death of their babies.  Usually, the disease resolves with the birth of the baby and placenta. But, it can occur postpartum–indeed, most maternal deaths occur after delivery.

Recent statistics from Christine Morton, PhD.

The trend toward “normal” or “natural” birth does not seem to allow a lot of space for our stories to be heard or to be told. This has the effect of making survivors feel marginalized – as though their experience is somehow too far outside “normal” to be a part of the overall conversation. The one constant of all of our stories is that none of us expected to become statistics. Our birth plans did not include emergency cesarean sections, seizures, ICUs, blood transfusions, strokes, hysterectomies, CPR, prematurity, PTSD, depression, or death. No one was more surprised than us. This isn’t about assigning blame – this is about finding answers, improving birth for ALL moms to come, and learning to live with the unexpected.

Walker: How did you get involved with researching for the Preeclampsia Foundation?

JC: I started out volunteering with the March of Dimes in the spring following my son’s birth. I started a walk team and raised money, hoping that I would be able to meet other moms who had been through something similar. I felt very alone in the months following his birth. I was dealing with postpartum depression (PPD) and post-traumatic stress disorder (PTSD) symptoms and struggling to feel normal again. I had a premature infant – which meant sleeping through the night was a problem for a long time. When I returned to work, I was greeted by a coworker who declared that she now no longer wanted to have children because of what I had gone through. This weighed heavily on me – and I felt like I was the cautionary tale, the one bad pregnancy story that everyone knows. I know I had never heard a story as bad as mine – so I felt deflated, flattened by the whole thing.

With the March of Dimes, I found moms to help me deal with the preemie part of it. As he matured and grew out of the preemie issues, I found that I still had a lot of issues to deal with regarding my own health – both physically and mentally. I decided to volunteer with the Preeclampsia Foundation after they merged with the HELLP Syndrome Society.  The Preeclampsia Foundation is much smaller than the March of Dimes, which allowed me to be much more active as a volunteer. I was able to use my writing and editing skills to work on the newsletter – and when I suggested that someone do a review of the available pregnancy literature based on how well they cover preeclampsia, I was given the opportunity to conduct that research and write the report myself. This was something I had been doing informally in bookstores for a while anyway, so it felt good to be able to look at the literature and confirm that the information really is severely lacking if not downright misleading in a large number of so-called comprehensive books. It really isn’t my fault that I missed the symptoms.

This year, I am coordinating the Orange County, California Promise Walk in Irvine as part of the foundation’s main fundraising campaign on May 18. I am hoping to bring a mental health expert from the California Maternal Mental Health Collaborative out to the walk to talk to the moms about dealing with the emotional impact of their birth experiences.  Many of these moms lost babies, delivered preemies, or suffered severe health issues of their own. Our community as a whole is at a very high risk for mental health issues, myself included.

It wasn’t until this year – 6 years after the birth of my son – that I finally sought professional help dealing with the PTSD from the very difficult birth experience. I feel that the volunteer work helped fill that spot for the past 6 years and brought me to the point where I can now process the trauma in a healthy way. I am not happy that I had eclampsia, but I am beyond grateful for all of the great people that it has indirectly brought into my life.

Closing Thoughts

To have to wait 6 years to receive the vital treatment for PTSD is a travesty. We are so thankful that Jennifer survived both the initial trauma, but endured its legacy of traumatic stress that lingers today. Unfortunately, PTSD subsequent to traumatic childbirth is growing in prevalence, and under-recognized by the majority of women’s health and maternity care providers.  I have learned a great deal from Jennifer and look forward to the work she and her colleagues will continue to do for the benefit of all women.

References

1.  WHO. Trends in maternal mortality: 1990 to 2008 estimates developed by WHO, UNICEF, UNFPA and The World Bank, World Health Organization 2010, Annex 1. 2010. http://whqlibdoc.who.int/publications/2010/9789241500265_eng.pdf. Last accessed:January 3, 2011.

2. Guise, J-M.  Anticipating and responding to obstetric emergencies.  Best Practice and Research Clinical Obstetrics and Gynaecology. 2007; 21 (4): 625-638

3. American College of Obstetricians and Gynecologists. Diagnosis and management of preeclampsia and eclampsia; ACOG Practice Bulletin No. 33. Obstetrics & Gynecology. 2002;99:159-167. 

 

Birth Trauma, Childbirth Education, Depression, Guest Posts, Maternal Mental Health, Maternal Mortality, Maternity Care, News about Pregnancy, Postpartum Depression, Pre-eclampsia, Pre-term Birth, Pregnancy Complications, PTSD , , , , , , , , , , ,

Beyond Downton Abbey: The True Life Trauma of Pre-eclampsia, Eclampsia, and Its Psychological Aftermath—An Interview with Jennifer Carney of The Unexpected Project

February 5th, 2013 by avatar

By Walker Karraa

Regular contributor Walker Karraa interviews Jennifer Carney, a mother of two, who suffered from eclampsia at the beginning of her third trimester.  Jennifer shares her real life story, on the heels of a favorite character’s similar experience on the popular TV show “Downton Abbey.”  Today, we learn about Jennifer’s experience and on Thursday we learn more about resources and organizations working hard to make this potentially deadly disease less harmful to pregnant and postpartum women.  - Sharon Muza, Community Manager

Introduction: 

http://flic.kr/p/dJBJhW

The recent episode of “Downton Abbey” brought much needed attention to the maternal health issue of pre-eclampsia. Why is it we rely on fiction for permission to get real? Where is the line between evidence-based research and fictional representations of the lack of it? How do we encourage each other and the next generation of maternal health advocates to harness the undeniable power of media but not become part of a social construction of maternal mortality as not real? As a qualitative researcher, I believe that some of our best evidence stems from researching real experiences from real women. It is my pleasure to introduce a real woman who experienced the full range of eclampsia and its psychological aftermath: Jennifer Carney.

Note: Consultation with Science and Sensibility contributor, Christine Morton, PhD was conducted to insure accurate and current statistical data regarding pre-eclampsia and eclampsia. 

Walker: Jennifer, can you tell us your story?

JC: My second pregnancy was easier than my first. Up until it wasn’t. I conceived as soon as we started trying. We had no soft markers on the ultrasounds, no need for an amnio, and no borderline gestational diabetes. I was only 34 and with a successful full-term first pregnancy; I was considered “safe” from preeclampsia. The only risk factor I had was my weight, but even with that, statistically my risks were much lower than for a healthy first time mom. There was something about it that seemed too easy. I felt like the other shoe was going to drop – but I never imagined that it would fall with such force.

In my 32nd week, I began to feel ill – like I had the flu. I took a day off from work to rest and recover. I thought I was getting better, but that night I began feeling worse. I called in sick to work again – it was a Friday – and my husband and son went off to work and daycare. I was alone. I laid down and slept for about 4 hours. When I awoke, I felt much, much worse. The headache radiated out from behind my eyes. I was seeing spots. I was incapable of thinking clearly. The phone rang several times, but the receiver was not on the base. I couldn’t locate it before the answering machine picked up. By this point I was aware that something was very wrong, but I wasn’t able to do anything about it. I stayed on the couch, barely moving for as long as I could.

Signs and Symptoms of Pre-eclampsia

  •  High blood pressure. 140/90 or higher. A rise in the systolic (higher number) of 30 or more, or the diastolic (lower number) of 15 or more over your baseline might be cause for concern.
  • Protein in your urine. 300 milligrams in a 24 hour collection or 1+ on the dipstick.
  • Swelling in the hands, feet or face, especially around the eyes, if an indentation is left when applying thumb pressure, or if it has occurred rather suddenly.
  • Headaches that just won’t go away, even after taking medications for them.
  • Changes in vision, double vision, blurriness, flashing lights or auras.
  • Nausea late in pregnancy is not normal and could be cause for concern.
  • Upper abdominal pain (epigastric) or chest pain, some- times mistaken for indigestion, gall bladder pain or the flu.
  • Sudden weight gain of 2 pounds or more in one week.
  • Breathlessness. Breathing with difficulty, gasping or panting.

If you have one or more of these signs and symptoms, you should see your doctor or go to an emergency room immediately. 
Source: Preeclampsia Foundation

Sometime after 5:00, I realized that I was going to have to call someone else to pick up my son at daycare by the 6:00 closing time. I managed to get to my feet and stagger toward the kitchen. I reached out to steady myself on the counter and missed. I fell to my left, onto the hard tile floor in front of the stove. I knew this was bad, but all I could think was that I had to hold on and that someone would be coming. I told myself that I couldn’t let this happen. Shortly thereafter, I tried to scream and felt the beginning of what I later learned was a tonic-clonic or grand mal seizure.  

This was eclampsia – full blown seizures caused by extremely high blood pressure. Somehow, I held on. Somehow, I held on in this state for something like 3 full hours. I have no way of knowing how many seizures I had in that time. When my friend arrived after 8:00, she found me on the floor. I came to long enough to answer her question – “yes, I know where I am. I’m fine.” I tried to get up – and immediately started seizing again. She called 911 and within minutes the paramedics arrived. 

My son was born, not breathing, about an hour later. The doctors were able to revive him, thankfully. He went off to the NICU and I was sent to the ICU. Two days later, I regained consciousness. I was on a respirator and completely disoriented. I was later diagnosed with HELLP syndrome, eclampsia, pneumonia, acute respiratory distress syndrome (ARDS), and sepsis – any of which can be fatal on their own. My son was moved to another hospital with a larger NICU, and I spent 8 days in the hospital where he was born. I saw him briefly before they transferred him – but was unable to hold him until after I was discharged – more than a week after he was born. For the next 20 days, I was only able to see him and hold him during daily visits to the NICU. It would be 4 full weeks from his birth before we could take him home to meet his 4 ½  year old brother for the first time. This was definitely not what we had envisioned.

This experience changed my entire perspective on life. It was the first significant health crisis that I had ever faced and it shook my sense of security and safety. It took a long time to recover physically from the trauma and emotionally I was just a wreck. I was aware that Post-traumatic Stress Disorder (PTSD) was a possibility, but I think the picture I had in my mind of what PTSD was turned out to be very different from the ways in which I experienced it. I had envisioned a quick, big breakdown – but the reality was much subtler. At first, I experienced an aversion to seeing pregnant women. I wanted to warn them, but I also could barely look at them. It manifested in other ways, too – dreams about seizures, muscle spasms, intrusive thoughts. But it felt manageable and the antidepressants helped control the runaway anxiety that had hampered my first postpartum experience 4 years earlier.

Photo: J. Carney 

The mental health issues were helped by the antidepressants, but I wish that I had tried therapy much sooner. It’s doing wonders for me now – but I waited over 6 years to try it. Today, my preemie is in kindergarten and doing well. Aside from my son, getting involved with the March of Dimes and Preeclampsia Foundation has been by far the best part of the whole experience. I wouldn’t change that part, at all.

Walker: How is mental health neglected in the overall understanding of the topic, treatment, and recovery?

JC: This is a huge problem. I got great care while I was in the hospital. I saw social workers, chaplains, and a wide variety of people who inquired after my pain levels and my coping skills. The problem with this is that I was on massive pain killers the whole time. Percocet and morphine can mask emotional pain as well as physical pain. I’m sure I came off as reasonably well adjusted to the whole experience, despite the mental confusion left over from the seizures and the serious health issues that remained. And I was relatively okay. Even during the month-long NICU stay, I was doing all right. I was sleeping well, eating, taking care of myself – but I was also still on Percocet. It smoothed over the rough edges.

It wasn’t until the help dried up, the prescriptions ran out, and the reality of being at home by alone with an infant to care for that the walls started to come down again. Here I was at the scene of the initial trauma, cooking at the same stove that I had seized in front of for hours, responsible for a premature infant who needed drugs to remind him to breathe. This is when I needed the help. This is when I needed information on PTSD and postpartum depression (PPD). This is when I needed support. And as I began the long process of understanding what had happened and why, I found I needed even more support to help me wrap my head around it all.

As I noted while talking about myths, there is a pervasive culture of blame in the overall birth discussion regarding preeclampsia. It can be hard to find information that doesn’t make you feel that you somehow brought this condition on yourself. I looked at the risk factors and the arguments about lifestyle, obesity, and diet – and found a lot of things that sounded like they made sense. But they only made sense if I internalized them and blamed myself for the shortcomings. Maybe it was my fault. This, as you can imagine, does not help the feelings of depression and trauma. It took a LONG time for me to come to the conclusion that there was no way for me to have known that this would happen or to have prevented it. Statistically speaking, I had a very low chance of developing eclampsia even with the risks factored in. Statistically speaking, my son and I should not have survived, either. But we did – and now I want to make sure that I use that in a meaningful way. 

Walker: Did your childbirth education prepare you for your experience?

JC: Heck no. I only took classes with my husband before our first child. We weren’t planning to take the classes again with the second, but since he was born at 7 months, we probably would have missed most of them even if we had planned to. I distinctly remember the childbirth educator talking about her own response to sleeplessness, which was a sort of slap happy, giddy reaction. She mentioned PPD, but not in any real way that conveyed the depths or potential seriousness of the condition. We also received almost no information on pregnancy complications. To me, preeclampsia meant high blood pressure – and I had never had problems with that before. It was totally off my radar. Plus, Preeclampsia very rarely happens in a second pregnancy if it didn’t happen in the first. So, no one prepared me for it. Not my doctor, not my classes, not my books.

Walker: What recommendations do you have for childbirth educators and doulas regarding this issue?

JC: Really, I think it comes down to trusting that the moms you are helping can handle the information that they NEED to know. I was alone. If I had known that these symptoms could mean eclampsia or preeclampsia, I might have been able to save myself from the seizures – which would have also likely saved me from the ARDS and pneumonia. My ICU stay might have not happened. My son was going to be born early – but if I had gone to my doctor or called an ambulance myself, it might not have been so close a call. It’s not my fault that I didn’t know – but it could have been tragic.  

Know the signs and symptoms. Know that a woman with severe PE might be having cognitive issues – confusion, and vision problems. Don’t ask her to drive. Don’t downplay distress. And take complaints of headaches, upper quadrant pain, nausea, diarrhea, shoulder pain, visual disturbances, and a general feeling that something is “off” seriously. And if you have a client or patient that experiences something like this, please follow up and ask about mental health issues. Be careful not to ask questions that can be answered with the words: “I’m fine”. Dig deeper.

Closing Thoughts

How might we increase our understanding of this issue through Jennifer’s story? Is it possible to begin a dialogue here–one in which we agree to change paradigms of learning and knowing women’s experiences beyond an episode of a fictional television show?  Jennifer presents an exemplar synthesis of the fullest range of insight possible when empirical and phenomenological considerations are employed.. Her lived experience combined with and through her knowledge of the evidence creates an exemplar of how knowing and knowledge cannot be divided if the pursuit of knowledge is truly desired.

In the next installment, scheduled for February 7th,  Jennifer reflects on common myths about PE, and her work with the Unexpected Project and the Preeclampsia Foundation.   

Birth Trauma, Childbirth Education, Depression, Guest Posts, Maternal Mental Health, NICU, Postpartum Depression, Pre-eclampsia, Pre-term Birth, Pregnancy Complications, PTSD , , , , , , , , , , , , ,