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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.

 

 

Babies, Breastfeeding, Childbirth Education, Newborns, NICU, Pre-term Birth, Research , , , , , , , , , , , , ,

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.

Babies, Cesarean Birth, Childbirth Education, Evidence Based Medicine, Guest Posts, Healthy Birth Practices, Healthy Care Practices, informed Consent, Maternal Quality Improvement, Maternity Care, Medical Interventions, Newborns, NICU, Practice Guidelines, Pre-term Birth, Pregnancy Complications, Twins, Uncategorized , , , , , , , , ,

Interview with Jannette Festival, Founder of Calgary Mothers’ Milk Bank (Part 2)

March 9th, 2012 by avatar

[Editor's note: This is the final post of  a two-part series.  In this series I interview Jannette Fesitval, RN, IBCLC, and Founder of the Calgary Mothers' Milk Bank].

Lisa Baker: What is the potential capacity of the bank?

Jannette Festival: That is really dependant on our supply of milk from donor moms. We anticipate that we will pasteurize 40,000 oz (1200 L) our first year. Our pasteurizer is capable of handling volumes up to 250,000 oz/year or 7500 L/year.

 

Lisa Baker: Who will receive the donor milk?

Jannette Festival: Because we won’t be able to collect all the milk that is needed we will need to triage it out. The easiest way to do this is to have the milk available by prescription. This will ensure that it will go to the sickest babies first. Our hope is to provide everyone that is in need of human milk.

 

Lisa Baker: What regions will the bank serve?

Jannette Festival: We would like to try and support Albertans first. But if there was a sick baby out of province who needed milk we would do our best to supply milk to them. If we are collecting milk from donor moms in other provinces then we will reciprocate when needed.

 

Lisa Baker: How will you recruit donors?

Janette Festival: Recruitment of Donors will be a full time job. Advertising and awareness is huge. There really needs to be a paradigm shift in how people value human milk and this is based on knowledge and education. By educating all health care providers I feel that this will be passed on to moms who will become aware of the importance of breastfeeding and may become potential donors.

We just received funding from the Calgary Breastfeeding Matters Group here in Calgary. and were able to create posters for all the Community Health Offices, doctors offices, really anyplace where moms and babies gather. The Milk Bank has also put in an advertisement in the book ‘From Here through Maternity’. Every pregnant mom in Alberta receives this book and there are 20,000 expected to be distributed in 2012.

 We also have donors who are moms that have lost their babies. Donating milk gives these women a chance to give back something positive when such a tragedy has occurred. We’ve attended Physician Conferences where we’ve discussed donor recruiting, testing of moms and testing of the milk. I’ve also presented to Neonatology Grand Rounds, NICU’s etc. – it’s never ending! And of course FaceBook and our website calgarymothersmilkbank.ca have helped inform the public of who we are and our mission.

 

 Lisa Baker: What is the screening process for potential donors? 

Jannette Festival: The screening process is very thorough and a bit of work on the donor part. We first start with a verbal interview on the phone that can be done in 20 minutes but usually takes a bit longer than that. This is followed by a written questionnaire, blood tests, and a visit between the donor and her health care provider. Once all the results are gathered and there are no issues we can accept the donor’s milk.

 

Lisa Baker: Do you anticipate lots of mothers to donate?

Jannette Festival: I don’t think we will have any problem recruiting donors. Donating human milk is one of the most altruistic acts a women can do. It truly is a win-win situation. Where else can you make this type of donation that could have such an impact on a baby’s future quality of life or even, life or death. When a mom has read our website and has decided she wants to donate, she is excited and eager to participate.

 

Lisa Baker: Where do you see the future of human milk banking?

 Jannette Festival: I think each Province needs to have it’s own milk bank. I believe that once the medical community observes the success of the milk bank and it’s impact on sick and fragile babies– more milk banks will open. I think that community milk banks are accountable and sustainable – they need to be to survive. They also have the ability and responsibility to educate the public about the importance of breastfeeding. Calgary Mothers’ Milk Bank will have free breastfeeding classes for moms prior to their babies being born as well as peer-to-peer support after. We really want to create a place where moms can gather and support each other. Milk banks should exist to support breastfeeding, not the other way around (Arnold, 2010). We would eventually like to participate in research of human milk.Hospital milk banks can work well, if they are valued. But if the hospital has a tight budget period, history has shown that often milk banks can be the first to go or cut back. And that’s what you don’t want to happen. 

 Arnold, Louis D.W. (2010), Human Milk in the NICU Policy into Practice (pg. 397)

For more information on the Calgary Mother’s Milk Bank, please visit their website at www.calgarymothersmilkbank.ca

To learn more about HMBANA and how to start a milk bank, please visit their website at www.hmbana.org.

Authoritative Knowledge, Breastfeeding, Guest Posts, Pre-term Birth ,