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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 , , , , , , , , , , , , ,

Free Webinar: Strong Start For Mothers & Newborns – Reducing Early Elective Deliveries

November 19th, 2012 by avatar

Science & Sensibility would like to let readers know of another free webinar opportunity that is coming up at the end of the month.  The Medicaid and Medicare Services (CMS) Innovation Center is offering an hour webinar titled “Strong Start For Mothers & Newborns – Reducing Early Elective Deliveries” for interested professionals who work with expectant mothers.

Strong Start for Mothers and Newborns is an initiative to reduce early elective deliveries prior to 39 weeks and to offer enhanced prenatal care to decrease preterm births.

flickr.com/photos/crincon/957539112/

Leaders in the field of reducing premature births will present information on the importance of reducing early elective deliveries.  They will also discuss how the health of both newborns and mothers can be improved by a reduction in early elective deliveries and share best practices that work toward this goal.  The speakers include representatives from American Congress of Obstetricians and Gynecologists (ACOG), March of Dimes, Health Care Providers and Insurers/Payers.  Success stories will be shared so that programs across the country can work toward reducing early elective births.

The webinar is being held on Wednesday, November 28, 2012 from 3:00- 4:00 PM ET

Please use this link and sign up to register.

Speakers include:

 Erin Smith

Patient Care Models Group

CMS Innovation Center

 

Hal C. Lawrence, MD

Executive Vice President

American College of Obstetrics and Gynecologists

 

Scott D. Berns, MD, MPH, FAAP

Senior Vice President & Deputy Medical Director

March of Dimes

 

Kenneth Brown, MD, MBA, FACOG

Medical Director

Woman’s Hospital (Baton Rouge, Louisiana)

 

Kathleen Simpson, PhD, RN, FAAN

Perinatal Clinical Nurse Specialist

Mercy Hospital (St. Louis, Missouri)

 

Vi Naylor

Executive Vice President

Lynne Hall

Quality Improvement Specialist

Georgia Hospital Association

 

Stephen L. Barlow, MD

Vice President & Chief Medical Officer

SelectHealth (Murray, Utah)

If you have questions or need more information on the Strong Start initiative or registering for this webinar, visit the Strong Start webpage or email us at StrongStart@cms.hhs.gov.

 

Childbirth Education, Continuing Education, Healthy Birth Practices, Healthy Care Practices, informed Consent, Maternal Quality Improvement, Maternity Care, Neonatology, Newborns, Pre-term Birth, Webinars , , , , ,

Donor Milk and Milk Banks; A Gift That Saves Lives

August 7th, 2012 by avatar
This week, in recognition of World Breastfeeding Week,  I am attending a fundraiser in my community, Seattle, for the Northwest Mothers Milk Bank, (NWMMB) which includes a reception and screening of the documentary, Donor Milk.  I am excited to support this important mission and am looking forward to viewing the film and participating in the Q&A afterwards with the filmmakers, NWMMB team members, a donor mom and a physician who routinely prescribes donor breastmilk for patients.
Science & Sensibility’s Lisa Baker and Deena Blumenfeld discussed the newest American Academy of Pediatrics’ statement on Breastfeeding and the Use of Human Milk, Donor Milk for Preterm Infants and the formation of a donor milk bank in Calgary, Alberta, Canada in some posts earlier this year.
I wanted to learn more about Northwest Mothers Milk Bank right in my own backyard, so I contacted Scotti Weintraub, Executive Board Member for the organization to get some of my questions answered.
Sharon Muza: Whose idea was it to start the NWMMB?

Scotti Weintraub:  A group of local lactation professionals had been talking about the need for a milk bank for several years.  In spring 2008, enough people were talking about it that an open meeting was held for anyone interested in starting a milk bank.  From that initial meeting grew the beginnings of a board of directors and a committed group of volunteers.

Sharon Muza: Why Portland, OR and the Pacific Northwest?

Scotti Weintraub:  Right now the closest nonprofit milk banks are in Denver and San Jose.  Oregon and Washington have the highest breastfeeding rates in the country so it makes sense that we’d have a milk bank in the Northwest.   Our volunteer effort grew in Portland and we incorporated as a nonprofit in Oregon.

Photo courtesy of NWMMB

 Sharon Muza: How has the vision of a milk bank been received in your community?

Scotti Weintraub: Very positively!  People involved in lactation are extremely supportive of our mission and want to see a milk bank open.  When we talk to the public, we often get asked, “Shouldn’t Portland already have a milk bank?” They are right – it would make sense that Portland and the Northwest would already have a milk bank.

Potential donor moms have been also very interested and supportive. We have a great deal of education and outreach work to do in the broader medical community.  The research is strongly in support of the use of donor milk and it is evidence-based best-practice.  But there are some who have been slow to embrace the unknown and have questions.  Part of our work up to and from here is to educate medical professionals and increase the use of donor milk.

Sharon Muza: Have there been any concerns or less supportive comments or actions?

Scotti Weintraub: Overwhelmingly people have supported our efforts.  When we are questioned about the safety of donor milk or why it’s so important, we point to the clear research.  Similarly, the AAP, WHO and the Surgeon General have all advocated donor milk as the next best food for babies if their own mom’s milk isn’t available.

Photo courtesy of NWMMB

 Sharon Muza: Are you modeling your bank after one already in existence?

Scotti Weintraub: The Human Milk Banking Association of North America has been hugely helpful in our start-up process.  Member milk banks have graciously shared their insight, time and wisdom.  We are modeling as much as can on their success.

But each community is unique and each milk bank is unique in its structure, how it’s funded and how it operated within its community. The Northwest Mothers Milk Bank is an independent 501c3 organization whereas many milk banks are part of a larger hospital system or hospital foundation.

 Sharon Muza: How many human milk banks are there in the US right now?

Scotti Weintraub: Right now there are 11 operating milk banks in the US.  There are several that are considered “Developing” like NWMMB – meaning that we have met some criteria set out by HMBANA and are in the works.  A couple other milk banks are not yet considered “Developing” but are moving in that direction.  Here’s the list.

Sharon Muza:  What is the cost to families who need milk?

Scotti Weintraub: Milk banks charge processing fees to cover the costs of screening donors, processing, pasteurizing, and culturing the milk and shipping.  This fee is set by the individual milk bank based on their costs, so we don’t yet know what NWMMB will charge for processing fees.

Donor milk that is dispensed while a baby is in the hospital is charged through the hospital.  Some of our NW hospitals are providing donor milk to their patients and are absorbing the costs into their budgets.  Some insurance companies cover donor milk.  There is more work to be done encouraging insurance companies to cover the costs of donor milk.

Photo courtesy of NWMMB

Since we are not yet open, I will share the policy from Mothers’ Milk Bank Austin, TX

“When your baby is hospitalized, the milk processing fee and shipping are billed to the hospital, and subsequently your insurance company. If a baby is not hospitalized, the fee will be billed to you. Texas Medicaid currently covers the cost for donor milk for a limited period of time, when medically necessary. If your family has private insurance, we encourage you to file a claim. We are happy to work with the family, the baby’s healthcare provider and insurance company to obtain coverage. If necessary, we can establish a payment plan. All babies with a medical need for milk, whose moms cannot provide milk, are eligible to receive it for at least a limited time, regardless of ability to pay.”

 Sharon Muza: What is the cost to collect, test, process and distribute milk?

Scotti Weintraub:  Nonprofit milk banks do not recoup their processing costs with the processing fees they charge and must raise additional funds.  Costs vary a bit depending on volume, equipment, etc.

Sharon Muza: Who will the milk be available to?  How will priority be determined?

Scotti Weintraub: Donor milk is available by prescription only.  Priority is given to the sickest and most vulnerable infants depending upon availability.  So there is a triage system for dispensing milk, especially during times of low supply.

 Sharon Muza: Under what circumstances are babies most likely to need donor milk?

Scotti Weintraub:

  • preterm birth
  • failure to thrive
  • malabsorption syndromes
  • allergies
  • feeding/formula intolerance
  • immunologic deficiencies
  • pre- or post-operative nutrition
  • infectious diseases

 Sharon Muza: What if a family cannot afford the milk?

Scotti Weintraub: Families are not turned away due to inability to pay.

 Sharon Muza: How is the donor milk tested and treated to insure its safety?

Scotti Weintraub: Here’s how the milk is processed.  The milk is pasteurized and then cultured to ensure the absence of bacteria.  Frozen donor milk is thawed, nutritionally analyzed, cultured, pooled and poured into bottles, then pasteurized at 62.5 C in a shaking water bath or automatic pasteurizer. Pasteurized milk is quick-cooled, then frozen at -20’C. Microbiological cultures are obtained by an independent laboratory from individual donors’ deposits prior to pasteurization and pooling, and from each batch of milk after pasteurization. This is done to verify that no heat-resistant pathogens are present before pasteurization, and that there is zero growth of bacteria after the heating process.

Sharon Muza: What are the obstacles to establishing the Northwest Mothers Milk Bank?

Scotti Weintraub: Fundraising!  If someone gave us a check for $150,000 tomorrow we could be open in a matter of months.  We have raised over $300,000 but must raise the remaining $150,000 before we can open.  As soon as we have secured the necessary funds, we will work quickly to open.

 

Photo courtesy of NWMMB

Sharon Muza: How much milk do you anticipate moving through your milk bank yearly?

Scotti Weintraub: We anticipate processing at least 40,000 ounces (more than 312 gallons) a year.  We also know that we are shipping a large volume of milk out of the region right now.  For instance, in June we shipped over 5,700 ounces of donated milk from four of our Donor Drop Off Sites to other milk banks.  And that’s only the milk from less than half of our current drop-off sites (the others haven’t yet reported their volume).  We anticipate growing the number of drop-off sites and donors once we open.  So we expect to have a large volume right away.

Sharon Muza: How can childbirth educators help spread the word about donor milk in their classes, both for potential donors and those in need?  

Scotti Weintraub: Everyone who works with pregnant and new parents can play a role in spreading the word.  Childbirth educators can tell expectant families about the availability of donor milk should they need it (most have no idea what donor milk is or that they could access it) and let them know that donation is also possible, if they have an abundance.

You can also encourage medical facilities and providers to utilize donor milk for their patients.  Find out if donor milk is available in your area NICUs and family birth units.  Share information about research and best practices to encourage the use of donor milk.

Sharon Muza: Can nursing mothers with babies of any age donate milk? Do you try and match new mothers’ milk with new babies?

Scotti Weintraub: Each milk bank sets their own donor requirements based on the HMBANA guidelines.  Generally milk is accepted from babies less than one year old.  All milk donations are pooled – meaning that the milk from 3-5 donors is mixed together within one batch.  This ensures even distribution of the milk components.  Occasionally, specialized milk is available – for instance preterm milk or dairy-free milk.

NWMMB Education Vid from Bob Eggleston on Vimeo.

Sharon Muza: What are some of the benefits of donor milk for babies?

Scotti Weintraub: According to the AAP, these are the benefits:

  • lower rates of necrotizing enterocolitis (NEC) and sepsis
  • fewer readmissions to hospital
  • higher intelligence testing scores and higher total brain volume
  • lower rates of retinopathy of prematurity
  • lower blood pressure and low-density lipoprotein concentrations
  • improved leptin and insulin metabolism

Sharon Muza: Can older children with severe allergies have access to the milk?

Scotti Weintraub: Milk is sometimes available to older children or adults for a variety of conditions depending on availability.

Sharon Muza: Any final comments to share with our educators and other birth professionals and readers? 

Scotti Weintraub: Donor milk is lifesaving for our most vulnerable babies and it’s very cost effective.  Just for NEC,

“Research shows that necrotizing enterocolitis (NEC), which donor human milk can help prevent, will increase a baby’s length of hospital stay by two weeks at an additional cost of $128,000 to $238,000. In addition, reductions in other complications such as sepsis through the use of donor human milk instead of formula means that the baby goes home sooner with fewer medical issues – and stays healthier.”

The remaining investment needed to open the NWMMB is less than the cost of ONE case of NEC!

Childbirth Educators, do you talk about donor milk and milk banks in your childbirth and breastfeeding classes?  How would you bring up this subject?  Do you think it is important to talk about with expectant and new parents?

Do any of our readers work in a facility that has human milk available for the tiniest patients in the hospital?

Have any of our readers chosen to donate breastmilk or been on the receiving end with their child?  I would love to hear your experiences. – SM

 References

American Academy of Pediatrics. Policy Statement: Breastfeeding and the Use of Human Milk. Pediatrics 2012; 129: e827–e841.

Arnold LDW. The cost-effectiveness of using banked donor milk in the neonatal intensive care unit: prevention of necrotizing enterocolitisJ Hum Lact May;18, 2002, (2):172-7

Boyd, CA, Quigley MA, Brocklehurst P. Donor breast milk versus infant formula for preterm infants: systematic review and meta-analysis.  Archives of Disease in Childhood – Fetal and Neonatal Edition 2007;92:F169-F175

Kuschel CA, Harding JE. Multicomponent fortified human milk for promoting growth in preterm infants. Cochrane Database of Systematic Reviews 2004, Issue 1.

McGuire, W, Anthony MY. Donor human milk versus formula for preventing necrotising enterocolitis in preterm infants: systematic review Arch Dis Child Fetal Neonatl Ed. 2003 8 F11-F14.

Quigley MA, Henderson G, Anthony MY, McGuire W. Formula milk versus donor breast milk for feeding preterm or low birth weight infants (review). Cochrane Database of Systematic Reviews 2007; 1-41.

Silvestre D, Ruiz P, Martinez-Costa C, Plaza A, Lopez MC. Effect of pasteurization on the bactericidal capacity of human milk. J Hum Lact. 2008 Nov;24(4):371-6. Epub 2008 Sep 10.

Sisk PM, Lovelady CA, Dillard RG, Gruber KJ, O’Shea TM. Early human milk feeding is associated with a lower risk of necrotizing enterocolitis in very low birth weight infants. 2007. J Perinatol Jul;27(7):428-33

Sullivan S et al.  An Exclusively Human Milk-Based Diet Is Associated with a Lower Rate of Necrotizing Enterocolitis than a Diet of Human Milk and Bovine Milk-Based Products The Journal of Pediatrics 2010; 156:562-7.

Tully DB, et al. Donor milk: what’s in it and what’s not.  J Hum Lact. 2001. 17: 152-155.

United States Breastfeeding Committee. Statement on the Safe Use of Donor Human Milk. Washington, DC: United States Breastfeeding Committee. 2008.

 

 

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Let Labor Begin on Its Own: A New Study from BJOG Seems To Say Otherwise for Twin Pregnancies

July 5th, 2012 by avatar

When the study titled Elective birth at 37 weeks of gestation versus standard care for women with an uncomplicated twin pregnancy at term: the Twins Timing of Birth Randomised Trial came out on June 13, 2012 both the BJOG:An International Journal of Obstetrics and Gynaecology in their press release: “BJOG release: Elective birth at 37 weeks gestation safer for mothers carrying uncomplicated twins, new research suggests” and Science Daily: “Earlier Birth, at 37 Weeks, Is Best for Twins, Study Suggests” reported the findings as strong evidence to support NICE’s (National Institute for Health and Clinical Excellence) guidelines.

“The findings of our randomised trial support the recent NICE recommendations. For women with an uncomplicated twin pregnancy at 37 weeks of gestation, elective birth was associated with a significant reduction in the risk of birthweight below the third centile, with no identified increase in the risks associated with early birth for either women or their infants.”

So what are the NICE recommendations?

  • 1.7.1.5 Inform women with uncomplicated monochorionic twin pregnancies that elective birth from 36 weeks 0 days does not appear to be associated with an increased risk of serious adverse outcomes, and that continuing uncomplicated twin pregnancies beyond 38 weeks 0 days increases the risk of fetal death.
  •  1.7.1.6 Inform women with uncomplicated dichorionic twin pregnancies that elective birth from 37 weeks 0 days does not appear to be associated with an increased risk of serious adverse outcomes, and that continuing uncomplicated twin pregnancies beyond 38 weeks 0 days increases the risk of fetal death.

Photo by www.photographybyjoelle.com licensed under Creative Commons

Let’s take a more in-depth look at the study. This is a randomized control trial where women with twin pregnancies were selected by phone to either be placed in the “standard care” bucket or the “elective birth” bucket. The goal of the study was to determine if an uncomplicated twin pregnancy delivered at 37 weeks gestation reduced the risk of death or serious outcomes for babies without increasing harm.

We do know that multiple pregnancies come with unique complications that singletons do not, such as high rates of prematurity, cerebral palsy, developmental delays and intrauterine growth restriction (IUGR) among others. Credit where credit is due, this study does not compare twins to singletons.  The authors maintain an apples-to-apples comparison by only looking at twins.  The researchers were specifically looking to see if elective birth (both induction and cesarean section) would reduce the risks of perinatal mortality, birth trauma, lung immaturity and admission to the NICU, necrotizing enterocolitis and systemic infection.

For the mothers, they looked at pre-eclampsia, eclampsia, protein-uria, renal insufficiency, liver disease, neurological disturbances, hematological disturbances, antepartum hemorrhage and abnormal umbilical artery.  They also looked at a number of labor and birth complications.  However, the focus of the study was primarily the infants, not the mothers.

“Multiple pregnancy is associated with both maternal and fetal complications. While women with a twin pregnancy are more likely to give birth prematurely, approximately 46% will give birth after 37 weeks’ gestation. For women whose twin pregnancy continues beyond 37 weeks’ gestation, there is a higher risk of perinatal mortality and morbidity with advancing gestational age. 

The Australian study looked at 235 women with an uncomplicated twin pregnancy at 36 weeks gestation. They were divided into women who planned an elective birth from 37 weeks (elective birth group) and women who planned birth from 38 weeks (standard care group).”

One problem I encountered was the relatively small sample size of 235 women.  The authors admit there should have been closer to 1100 mothers to validate their findings:

“There are several limitations to our findings. The current trial was stopped before completion of the estimated sample size for a lack of ongoing funding. We are therefore relatively underpowered to assess our primary outcome of serious adverse outcome for the infant, as well as uncommon maternal labour and birth complications. To detect  a 66% reduction in adverse outcome at term as suggested using plurality-specific data would require a sample size of approximately 1100 women with an uncomplicated twin pregnancy at term.”

Another problem I encountered while looking at the data was that the gestational age of the “Elective Birth” babies was roughly the same as the “Standard Care” babies, differing by only 0.5 weeks.

“Despite our trial protocol specifying birth for women in the Standard Care Group being after 38 weeks of gestation, and as close to 39 weeks as possible, 45% of women in this group gave birth between 37 and 38 weeks of gestation, reflecting the practicalities of scheduling induction of labour and caesarean section procedures in a busy maternity environment at close to 38 weeks of gestation. The resultant mean difference of 4 days in gestational age at birth is consistent with the identified difference of 90 g in mean birthweight. However, these identified differences do not explain the significant reduction in the risk of birthweight less than the third centile observed in the Elective Birth Group, raising the possibility that this was a chance finding.” (emphasis mine)

But, yet, one of the main reasons they suggest elective birth at 37 weeks is due to IUGR or small for gestational age. Out of the “Elective Birth” group, 7 babies were in the third percentile or less (3%), the “Standard Care” group had 24 babies (10.1%). On the surface, that is much higher.  However, the “Standard Care” numbers also accounts for emergency cesarean sections and induced labors for medical reasons.  For ethical reasons unplanned inductions and cesarean sections needed to occur.

The questions I have are:  how badly did that skew the data?  How accurate is the gestational age of the babies? There is no indication in the study to tell us that these pregnancies were accurately dated via early ultrasound, etc. so some amount of variability in gestational ages may have impacted results.

How is elective twin birth managed here in the U.S.?

ACOG

In the American Congress of Obstetricians  and Gynecologists’ ACOG Practice Bulletin #56, 2004, reaffirmed in 2009

“The nadir of perinatal mortality for twin pregnancies occurs at approximately 38 completed weeks of gestation and at 35 completed weeks of gestation for triplets; the nadir for quadruplet and other high-order multiple gestations is not known. Fetal and neonatal morbidity and mortality begin to increase in twin and triplet pregnancies extended beyond 37 and 35 weeks of gestation, respectively.  However, no prospective randomized trials have tested the hypothesis that elective delivery at these gestational ages improves outcomes in these pregnancies.”

At this time, ACOG is not recommending elective birth at 37 weeks for twins.  The data that ACOG provides reflects the same information as NICE and as in the BJOG study. So the data set is the same, it’s the recommendations for scheduled birth at 37 weeks that differ.

The March of Dimes

The March of Dimes makes no distinction between singleton and multiple gestation pregnancy with regards to their campaign, Healthy Babies are Worth the Wait™  to prevent prematurity. “In 2010, the Joint Commission established a new perinatal care core measure set that includes the number of elective deliveries (both vaginal and cesarean) performed at > 37 and < 39 weeks of gestation completed.”   I speculate that is because of the relative rarity of twin births in relation to singletons. Although I’d like to see a future statement specifically on twins in this regard.

Lamaze

Lamaze Healthy Birth Practice #1 – Let Labor Begin on Its Own” would appear to be in conflict with the BJOG study and NICE’s recommended practices. However, there is always an exception for a true medical need. Induction and scheduled cesarean sections, when used judiciously, are lifesaving for both mother and baby.  Professor Jodie Dodd, one of the researchers in the BJOG study, believes strongly in her results. So much so, that she and the Univeristy of Adelaide put out this video regarding her findings.

Even with a smaller sample size than required for a full analysis, this study, plus previous others, as cited in the references, shows a correlation between birth at 37 weeks for twins and reduced risk for low birth weight and perinatal mortality. As a Lamaze educator, I feel an internal conflict with the March of Dimes information, Lamaze’s Healthy Birth Practice #1 and the study results. My belief is that all babies know their best time to be born, including twins. I think that every twin pregnancy should be taken on a case by case basis. Truly, there are increased risks with any twin pregnancy. However, the risks always need to be explained in context of the long term effects of a scheduled birth on breastfeeding; cesarean section complications; and long term complications of prematurity on the babies. As long as the mother has the full set of information she can make an appropriate decision with her individual care provider regarding scheduling the elective birth of her twins.

This post was written by regular contributor, Deena Blumenfeld, RYT, RPYT, LCCE  To read more about Deena or to contact her, please see our contributor page.

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