Not long ago, yet it seems like ages, we had the good fortune of meeting Mark & Christine Ommen although the circumstances were far from fortunate as they had just lost their precious Matthew to an umbilical cord ‘accident’. I say we had the good fortune because this is an amazing talented young couple who now share our passion at Star Legacy Foundation for preventing stillbirth. Christine began blogging as a therapeutic release but she has a true gift for putting on paper what so many of us have come to understand along our own journeys. Read this blog and then read the rest – they are simply amazing. You will no doubt subscribe to her blog as we have so you don’t miss anything. Little Matthew is impacting so many through the voice and pen his Mother provides.
Right after Matthew died, I left my bed only to meet visitors in our living room. One day, though, I just couldn’t. That day was especially dark, my “I want to die” feelings particularly intense. Mark warned ES I wouldn’t get up, gave her an easy out. But she visited anyway.
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I am often asked – How is Star Legacy Foundation different? I usually give a long-winded answer about our programs and amazing volunteers. Today, the answer that sums it up best is this: we believe we can do better.
When my son was stillborn 11 1/2 years ago, my doctor explained our loss to me with the words that ‘sometimes these things just happen’ and then she went on to say “the chances of this ever happening again are less than being struck by lightning twice in the same day.” I have talked to countless families since then who were given the same explanation or a variation of that concept. Maybe I’m stubborn, but I wasn’t willing to accept that as an answer. I am a nurse practitioner and live in the medical world and see amazing things happen every day. Some happen so often that we now take them for granted. We do surgery on babies while they are still in utero; we transplant major organs; we eliminate diseases that once caused epidemics; we cure cancers.
Why do we accept that healthy babies at a viable gestation with healthy mothers having healthy pregnancies can just die without any warning or notice?
I don’t blame my doctor for this explanation because I know it was the answer she was given at some point. During her training, this was the information provided to her. The lack of research and awareness perpetuates this lack of advancement.
I blame our culture for not asking more questions.
- We need to expect more research into this issue.
- We need to expect better care for our babies.
- We need to expect these children to be honored by trying to prevent others from the same outcome.
- We need to expect that families will have access to all the support and resources they need to navigate their grief journey in a healthy way.
- We need to expect that we can and will do better.
At Star Legacy Foundation, our focus is on research and education because that is what we need for our health professionals to know more about prevention and caring for families. We have high standards and expectations because we believe it is possible. Much of it is right in front of us, but we need to reframe what we value, how we view these babies, and how we can use our tools and resources.
Many other developed countries are seeing decreases in their stillbirth rates. It is possible. Some estimates indicate that the stillbirth rate could be cut in half by changing current protocols or utilization of resources. We don’t need a fancy, new, Nobel prize-winning, molecular break-through. In short – we need to value these babies and be willing to put energy into doing all we can for them. By cutting the stillbirth rate in half, there would be 13,000 more babies who go home from the hospital every year in the US. There would be 13,000 families who will enjoy the holidays this season through the eyes of a precious newborn child instead of struggling through the holidays with the heart-break of ‘what could have been’ or ‘almost was’. In five years, there will be 650 classrooms full of kindergartners who won’t be there without our efforts today.
It is possible.
Please join us in making it happen.
WE. CAN. DO. BETTER.
Our guest blog this month is provided by our good friend and esteemed colleague Dr. Jane Warland of Adelaide, Australia. We are grateful to Dr. Warland for all the work she is doing to prevent stillbirth. If you have a question for Dr. Warland you can submit it here.
As I midwife I have certainly seen many babies born with the cord around the neck who are born alive and well, apparently completely unaffected. I have also seen plenty of comments from women on facebook and other social media who are prepared to say “my baby was born with the cord around his neck and he was fine” implying, by making that statement, that because their baby was fine that that must mean that it is never a problem!
I have also seen the other side of the story. My daughter Emma was stillborn with the cord around her neck. Whilst I have never thought that this was the only reason for her death I think it probably contributed, as I will explain below. I have also served as a midwife on South Australia Perinatal sub committee. This committee looks at all stillbirths in South Australia and classifies the cause of death. Whilst serving on this committee I had the privilege of learning from the wonderful Dr Yee Khong (South Australia’s awesome perinatal pathologist) about signs that he sees in cords of stillborn babies that indicate to him that the cord played a part in the stillbirth. That said I also know from my service on this committee that cord round the neck is quite rarely attributed as the cause of death, even if it has played a big part; it is usually considered a contributory factor. This means that when people read perinatal statistics they don’t see “cord around the neck” as a cause of death and this can lead to the false assumption that cord round the neck never causes stillbirth.
So I think the short answer to “is the cord around the neck a problem or not?” is “it depends”.
Depends on what? Probably lots of things but here are the top 3…IMHO:
· The type of wrap
· The vulnerability of the unborn baby
· Other factors such as the position of the placenta, the length of the cord, the amount of whartons jelly and the “cord design” AND the position of the baby in the uterus.
Type of wrap:
Jason Collins has done a lot of work in this area and he describes two types of nuchal cord illustrated in the picture below:
Type A circles the neck but is able to slide, Type B locks on itself and can tighten. Times when it is especially likely that the tightening can occur are when the baby naturally drops into the pelvis ready for birth at around 36 weeks and also when the baby moves down into the pelvis during birth.
So if the baby has a type B cord then clearly this has the potential to be MUCH more problematic than a type A. Why? Well the type A is likely to slip past the body as the unborn baby moves around and/or descends during birth whereas the type B will tighten and may cause such distress that a c-section is warranted and can also cause the baby’s lifeline to become squeezed and blocked such that it can result in the unborn baby’s death. Can the person delivering the baby tell if the baby was a type one or type two cord? No BUT it can be clearly seen on ultrasound…if you are looking!
The baby who dies to stillbirth often has a combination of factors which together result in stillbirth. The tricky thing is that whilst we know some factors that make the baby vulnerable to stillbirth such as the baby who fails to grow, or the baby who fails to move as normal, there are many factors that we don’t know about yet that also make the unborn baby vulnerable. Looking at the circles we can see that if the baby is vulnerable AND he has a type 2 cord around his neck AND he has a posterior located placenta AND a long skinny cord AND mother who regularly sleeps on her back that all these factors combined may just be the straw for THAT baby.
My “triple risk model” helps give a visual for this:
There are many other factors that can come into play regarding whether or not the cord around the neck MIGHT be a problem for SOME babies. These include: the position of the placenta, the length of the cord, the amount of wharton’s jelly and the “cord design” as well as the position of the baby. Briefly if the cord is thick, normal length, nicely spiralled (without being excessively so), has three vessels and lots of wharton’s jelly then THAT baby is much more likely to be born alive and well even IF the cord is around the neck than if the cord is long, skinny, straight and with minimal wharton’s. For more about this have a look at Dr Collin’s book Silent Risk
So should a pregnant mother worry if it is seen on ultrasound that her unborn baby has the cord around its neck? No she shouldn’t worry BUT she should be aware that there may be other factors at play (such as I have listed above) that mean that this could end up being a problem for her unborn baby. So IF she knows that her baby has the cord around its neck (an oftentimes she doesn’t) then that’s the mother who should pay particularly attention to what other factors she can remove from the circles of the triple risk model to help keep her baby safe.
Welcome to October! In the US, it is National Pregnancy and Infant Loss Awareness month. And it is a bittersweet month for me.
It is amazing because we have an entire month to hold special events or wear PAIL ribbons and pins. We have a sense of community that isn’t always present. This year, many of us are turning our facebook profiles pink and blue to remember our babies and spread awareness. Thee are memorial services and waves of light. Here in Minnesota, we just had our annual Run/Walk with over 900 people coming together to share memories and create hope for the future.
I recently returned from two international conferences where we had the opportunity to discuss pregnancy loss/stillbirth issues. We have been asked for newspaper, radio, and TV interviews. There is so much good energy and positive action.
I am also frustrated and upset that we even need this awareness. I am saddened that so many families join this community every year and have a reason to be with us. It breaks my heart that many more families are grieving in silence.
Please take this month to remember all the babies gone too soon. But think about our community as well. Reach out to those who may not be able to reach out for themselves. Remember that we all grieve differently and have different needs. Look for opportunities to share your story so that the larger community will know about our efforts and other families will not feel alone. Celebrate the organizations, businesses, and individuals around you that are making a difference for families. Let the world know about their good work!
This is a month where it is easy to feel that our solitary efforts are minor. But every effort is significant. When all of our efforts are combined, we can do incredible things for this cause. We may not have the entire NFL wearing pink and blue (yes – I admit I am jealous of breast cancer awareness!) But we know that we are remembering our precious babies in our own ways. We are working to reduce heartache of tomorrow’s families. We know that this month is special because we get to say that our babies matter – every month.
If you are struggling with your grief or would like to talk to someone who has been on this path, please call our support line: 952-715-7731.
Star Legacy Foundation Kicks Off Pregnancy & Infant Loss Awareness Month With Annual Run/Walk Event!
October was designated as Pregnancy & Infant Loss Awareness month in October of 1988 by President Ronald Reagan. It’s an important time for us all to remember the babies, reflect on what has been accomplished and recommit to our vision that one day – pregnancy & infant loss will truly be a rare event. Star Legacy Foundation holds an annual event to kick off the month filled with awareness activities.
We are fast approaching our annual Let’s Not Be Still! Pregnancy & Infant Loss Awareness Walk/Run – Saturday, September 26, 2015.
It is already shaping up to be bigger than ever! You won’t want to miss out!
Why is this important?
We do this annual event each year for a number of reasons.
- Most importantly it is a time to bring our loss community together in ways that are not otherwise possible. There is comfort in being together in a community of other loss families, friends, advocates and supporters where everyone ‘gets it’ and there is no need to explain.
- It is an opportunity to spread awareness about the thousands of babies that are miscarried, stillborn, or only live a short time after birth. Through our extensive marketing efforts, we can keep these issues in the public.
- And we raise funds that help us continue our programs and projects dedicated to awareness, research, education, prevention & family support!
What’s happening at this event?
- It is a time to remember our babies memories but yet celebrate what their memory adds to our lives. Again this year, babies names will be added to the shirts as a permanent reminder of why we do what we do!
- We’re adding a new event specifically to remember the babies! The Eden Prairie Parks & Recreation Department has graciously allowed us to plant a memorial tree on the grounds at Staring Lake Park. We will be dedicating this beautiful white oak tree and placing a memorial stone at the base. All families are invited to come and paint a rock in their baby’s memory to place at the base of the tree for the memorial ceremony. Then – take your stone home with you at the end of the day!
- Abby Libsack Photography will be taking team photos prior to the start of the activities! Be sure to gather your team early and get your photo taken!!
- We’ll have fun! This event is designed for the serious runner, the not-so-serious runner, the walkers, kids and toddlers! There is something for everyone.
- Back by popular demand, we will have face painting stations available for the kids!
- New this year – a raffle! You can purchase tickets and drop them into the jars for the items you wish to try for! We have lots of donated items and the list continues to grow. Be sure to check the list often!
- The organizer of the top fund-raising team will receive 4 – one day Disney Park Hopper Passes – a $600 value! It’s not too late to create a team or support a team!! This year registration fees are applied to team totals!
- Susan-Elizabeth Littlefield of WCCO will be our Mistress of Ceremonies!
- The producers of Don’t Talk About The Baby will be joining us. For their upcoming documentary on pregnancy loss, they are asking to video families willing to share their stories. Schedule an interview with the producers here. (Run/Walk participants will have priority for interview times.) Interviews held in Eden Prairie, MN.
- The 11 Angels Project of the Star Legacy Foundation will be with us to share about their care companion program. This group is looking for new volunteers. Stop by to learn how you might be able to help other families.
- And certainly not least of all – several of the legislators that helped us pass legislation in Minnesota this past year will be joining us! Please be sure to take a moment to thank them and tell them how much their efforts mean to you!
What do you do with the funds raised?
Funds raised at this event go to the programs and projects of the Star Legacy Foundation. We have lots going on and your participation will help us in so many ways! Unlike so many other nonprofit organizations, we have very little overhead and every dime raised goes to supporting our programs and projects! This is VERY important to us and we are very proud of that fact! Ongoing projects include:
- Family support efforts through our 11 Angels care companion team
- Awareness activities – both local and nationwide though our media efforts and Champion events
- Expanded awareness through our presence and presentation at national and international meetings
- Patient education materials designed to help expectant couples monitor their baby before birth such as our See Me, Feel me program – which is now also available in Spanish!
- Educational events like the Stillbirth Summit
- Nationwide support line staffed by professional grief counselors
- Support groups for grieving families – specifically for bereaved parents; couples experiencing pregnancy after loss; and grandparents/extended family & friends
- Health care professional education & recognition projects
- Support for ongoing research and publication of study results
- Continuing efforts for analysis and sharing of results from our STARS Study.
- Development of new research studies
- Legislative efforts for a number of issues related to our objectives.
There are also a number of exciting new projects in development that you’ll be hearing about in the months to come – all made possible by the generosity of those who are passionate about saving babies.
What if I am unable to attend this year?
- Even if you can’t be there in person – you can participate virtually and we will mail you one of the event shirts!
- If getting a shirt isn’t important to you – your donations are gratefully appreciated.
- Check out our calendar to see if we are holding an event near you! Plan to join in!
- We work with families all over the country in planning their own events to support our programs and projects. If you would like to host such an event – let us know!
- Mark Feb 13, 2016 on your calendar and plan to attend a very special new event to honor our babies and recognize the perinatal loss heros and efforts that are truly making a difference. More details to be announced soon!
The two most common questions I hear from stillbirth families are:
1. Why did this happen?
2. How can I make sure this never happens again?
For the second question – I have found great comfort in doing whatever I can to support stillbirth research. From a large, public health perspective, that is one of the things I can do to help ensure future families do not have to endure this tragic journey. Selfishly, it also helps me to think that something good could come from sharing my own stillbirth experience.
I know many other families feel as I do. The proof has hit the medical literature this week as the first paper from the STARS Study. Click here to read the paper. Drs. Jane Warland, Louise O’Brien, Alex Heazell, and Ed Mitchell have written an article that describes the importance of listening to pregnant mothers as well as the need for more research in emerging areas of interest. We are so grateful for their hard work, expertise, and friendship! These four researchers really are among the best and most dedicated in the world!
The Study of Trends and Associated Risks for Stillbirth (STARS) Study began in 2012 as an outcome of the Stillbirth Summit 2011. The majority of the researchers in attendance worked together to create the online survey that over 1700 women then answered! It is a wonderful example of researchers, health professionals, and families working together to address the many questions surrounding stillbirth.
In addition to this cohort of women who had a stillbirth more than 3 weeks before they completed the survey, another controlled cohort completed the study within the first 3 weeks of their losses. We anticipate results from that portion of the work to be available soon as well.
Star Legacy Foundation would like to take this opportunity to thank the researchers who are so passionate and dedicated to this cause. We are fortunate to have brilliant minds focused on saving these babies. Most importantly, we want to say THANK YOU to all the women who shared their stories for this effort. It isn’t easy, but your courage is helping us learn more about stillbirth prevention and treatment.
For anyone who wasn’t able to participate in the STARS Study (or also for those who did!) – there are many other opportunities to contribute to research projects. Research studies that you might be eligible for are listed on our website under Research. Current options we know of include a sleep study, psychological aspects of stillbirth study, physical activity studies, and study of stillbirth mothers of color.
Plus – Star Legacy is continually working on more research efforts and will hopefully have some exciting announcements in the near future. Our hope is that everyone with the strength and courage to share their experience for stillbirth prevention has the opportunity to do so!
Thanks again for your support in these studies and in sharing the results!
“I don’t want to scare my patients.”
I hear this from obstetricians on a regular basis. And, at first, it seems caring and comforting. However, as I think about it more, it can be condescending, paternalistic, and unethical.
When we are scared, we are simply nervous or concerned about a possible poor outcome or event. Pregnant women are always scared on some level about the health of their babies. This is often seen as a good thing because it’s a motivator to make good choices and follow medical advice. For example, we regularly and easily tell women that smoking, lack of prenatal care, certain diseases, specific medications, etc can harm their baby. That information empowers women to make informed choices.
So why are providers hesitant to tell pregnant women that stillbirth can happen, that monitoring fetal movement is a way of monitoring the baby’s well-being, that they have a higher risk for stillbirth, that some concerns are identified on ultrasound, or that women who have had a poor pregnancy outcome have a higher risk of poor outcomes in future pregnancies?
I see two main differences.
First – it’s easier to make recommendations that only require the mother to change her behavior. If it is a concern that will require a change in protocol, more office visits, additional tests, and possible interventions, it becomes challenging, time consuming, and more ambiguous in terms of expected progression and outcome. These changes may also require a provider to advocate for the patient with hospitals, other health professionals, clinic staff or partners, and insurance companies.
Second – all these changes require the provider to navigate the rest of the pregnancy in a more stressful environment with fewer solid options to ensure a perfect outcome. This is very scary – to the provider. It is of course, scary to the families as well, but not any more so than concerns about folic acid and anatomical abnormalities. We address those patient fears by providing education and resources. The same should be done for providers – they aren’t scared when they have good, solid research and the support of major organizations.
The key in all of this is that we need more research into things that may ultimately help prevent many stillbirths or other poor outcomes. I absolutely believe this and haven’t found anyone who disagrees. There are certainly things we can do as families and advocates together WITH the medical community to bring awareness and funding to stillbirth research. And we should do them.
The harder answer is how to approach these challenging situations until we have the solid evidence needed. While we wait, 71 babies are stillborn in the United States every single day. To those families, waiting patiently is not an option.
A common approach is for the providers not to inform their patients of these underlying issues. They feel they are being compassionate by not making the patient worry about something ‘they can’t do anything about’. And the statistics reinforce this decision. For 159 of every 160 patients they see, this approach works great. The mother is ignorant and blissful and both mom and baby have acceptable outcomes. It’s beautiful. Until the 1 in 160 walks into the office to learn her baby’s heart has stopped beating. If you are that one parent, your life has been altered forever because you were hit by a train you didn’t even know was on the tracks.
For that family, playing the odds is not acceptable.
I am troubled by providers withholding information from patients or assuming they will get it elsewhere. Even if it isn’t good news, there is an ethical obligation to inform your patients of all you know. We may be scared to think about getting a colonoscopy, but our doctors recommended them, explain them to us, and help us create a plan based on what is learned.
I am also troubled by OBs and midwives feeling they can’t do anything about these issues. They manage risk and challenging pregnancies every day. In simple terms, they screen for problems, monitor issues that have been identified, and do all they can to support mom and baby physically until the baby is delivered or until the baby is determined to have a better chance at a full life if they are delivered rather than continue in a distressful pregnancy. On a psycho-social level, this strategy also allows the family to process the situation, make decisions, gather support, and identify resources. These acts can be invaluable during the pregnancy, but can also make a significant difference when the pregnancy is over – regardless of the outcome. Applying this management concept to more risk factors or conditions has the potential to save many babies and assist thousands of families in their emotional health. But it requires communication and full disclosure.
I also want health professionals to understand that your patients don’t expect you to be super-human. We may not like it, but we realize you may not be able to eliminate all risk or promise perfection. Sometimes the best answer in medicine is “I don’t know.” There is a level of appreciation when physicians explain to a family that they don’t have a magic wand or crystal ball. At that point, all we need is all the information you have and the ability to work with you to create a plan that makes the most sense for us. Knowing that our provider was honest with us, listened to our wishes and concerns, did all he/she could, and was on our side the entire time means so much to us regardless of the outcome.
More than ever, medicine must be a partnership between the providers and the patients. To any providers reading this – let your patients be part of the team! They have insider knowledge, they are heavily invested, and they can be your biggest ally. On an individual level, this can lead to amazing relationships that benefit everyone (even if the outcome isn’t perfect). On a bigger level, they can help encourage the research and resources you need to do even better for future patients. Knowledge empowers. Ignorance disempowers.
My hope is that obstetrics will start to address the fears of providers and let the patients help. In the mean time – sharing information is the best way to empower us all.