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.
By Star Legacy Foundation Board Member, Chris Duffy in honor of Father’s Day 2015.
On November 2, 2014 at 4:47 p.m., our family was robbed. Robbed of a beautiful red-haired girl with so much potential.
Our daughter, Reese Christine Duffy, was born without a heartbeat less than 24 hours before her scheduled delivery. The umbilical cord was wrapped around her neck, but that didn’t stop her from looking like a perfect baby girl.
I have always wanted a daughter. I knew I would be good at treating my little girl like a princess, intimidating her boyfriends, and walking her down the aisle with pride. This Father’s Day, it would be easy for me to dwell on the fact that I don’t get to do these things with Reese.
But I’ve done enough dwelling over the last seven months. So instead, I’m going to make a list of promises to my cherished daughter.
Reese Christine, I promise…
1) To look at your picture and think about you every day for the rest of my life.
2) To take good care of your mom and older brother.
3) To talk about you often so that our children will be excited to meet you when they arrive in heaven.
4) To continue sharing your story with anyone who will listen so that they understand that life is precious.
5) To do something every day that will make you proud, because I know you’re watching me like a hawk.
6) To cherish every moment with your brother, even when he’s acting like a stubborn toddler.
7) To make sure that your mom doesn’t blame herself for what happened. You and I both know she did an extraordinary job carrying you for 39 weeks.
8) To talk to you in moments of elation, despair, and anything in between.
9) To always remember the countless gifts you have given us.
10) To hold you and never let go, when I meet you on the other side.
Happy Father’s Day, Reese. I am honored to be your dad.
Reese Christine Duffy was stillborn into the arms of her parents, Chris and Amanda, and big brother Rogen on November 2, 2014 due to an umbilical cord accident. Chris joined the Star Legacy Foundation Board in 2015 and currently serves as the Board Vice Chair. Learn more about the Duffy’s here.
May is my favorite month. In Springtime, flowers are blooming, birds are singing, and there are signs everywhere of new life. It is a wonderful time to celebrate new beginnings and make new memories. It is the month we celebrate Mother’s Day, which honors all Mothers, Grandmothers, Stepmothers, Adoptive Mothers, and more.
For me, Mother’s Day is a day that brings up many emotions – the gratefulness of my living children, a reminder of my struggles with infertility, and the stinging heartbreak of knowing that one of my children is not with us. There are so many different types of Mother’s and sadly, some go unrecognized. “Being a Mother is not defined by the number of children that you see, but by those you hold in your heart.” In my heart, I hold 9 children, although you can only see 3. I make a point on this day to recognize all of my friends who are Moms, especially those who hold their babies in their heart.
May 18th marks the 6th birthday of my daughter, Savannah Grace. Although you cannot see her, she is very much present with us. I try not to define her by the grief I feel, but rather by the joy of knowing that she is still very much a part of our lives. Every family photo, every time I look around the dinner table, not a day goes by that I don’t think about her and miss her. And yet, she is with us. She is there – in the warmth of sunsets, the beauty of the tulips, the butterfly that hovers, the chirping of the birds, the song that comes on the radio when I am feeling sad. Yes, Savannah is all around us.
It wasn’t always like this. For a long time, my grief kept me in a very debilitating place where it was hard to see beyond the pain. My daughter’s death, at 40 weeks and 3 days was preventable. I never in a million years thought that in this day and age with as much advanced education and technology that stillbirth still occurred. But it does. It happens to 71 families each day, 26,000 per year in the US. These numbers are shocking and startling. And it happened to me, even though I didn’t fall into any of the “risk categories.”
But if I could share with you one thing about grief after 6 years, it would be that it does get better. The load lightens, and there comes a day where you cry less, hurt less, and begin to find joy again. I can’t tell you when exactly it happens, but it does. I spent years being angry at what happened. I was angry at everyone – at my doctor, at the hospital, at my friends who had babies, at strangers. It was debilitating and hurt me in so many ways. I suffered 4 miscarriages during this time. Loss upon loss is overwhelming. But there came a day when I had to make a choice. I had to decide if I was going to continue to let this anger eat me up and destroy my relationships or I was going to find a way to find beauty within the tragedy. I think that turning point came from finding The Star Legacy Foundation.
Find beauty within the tragedy – how can you honor the life of your baby and make good come out of sadness? Can you join a non-profit in your community, volunteer at your foodbank, share your story at a support group, or something else? Building a garden or plant flowers, participate in a Walk or 5k, make a donation in your baby’s name, or come up with your own random act of kindness.
Another big piece of the puzzle for me was forgiveness. To forgive someone who doesn’t take responsibility or even face you after inadvertently causing your child to die can be a real challenge and may seem impossible for most. But it was a choice. It took me nearly 3 years to get to that point. Forgiveness isn’t about the person who harmed you or your baby; rather, it is something that only you can allow into your heart. You can choose to forgive when you are ready. It doesn’t negate what happened or fix it or bring back your baby. It is about releasing the ropes that tightly bound your heart in anger and keep you from finding peace. And it’s OK if you aren’t there yet. But I hope you will be one day.
Today, I am grateful for my daughter Savannah – not for her death but for her life. I was given 40 weeks and 3 days with my precious daughter and although I would have given anything to have more time, there was a different plan. Savannah has changed me – she has made me a better wife and mother, a better friend, and a more productive member of my community. She has made me more compassionate and understanding. She has taught me the gift of life, the preciousness of a day, of an hour. Our time together was brief, but it was an amazing blessing. While I spent many years wishing it had been me and not her, I have come to accept that there is just more work for me to do.
What will you do with your gift of time? How can you make a difference in someone else’s life? As Mother’s Day is upon us, can you find your own beauty within the tragedy? Losing a child is never easy – you can never prepare for it. But you can heal and you can move forward, never forgetting your baby, but honoring him or her along your journey.
On this Mother’s Day, I honor all of the Mothers, Grandmothers, sisters, aunts, nieces, friends, neighbors, co-workers – all of those who are missing a member of their circle. But there is joy in suffering, there is more we can do to make a difference, there is more we can do to prevent stillbirth and promote healthy pregnancies and healthy babies. Think of your friends or family members that might be pregnant – will you share the information about healthy pregnancies and stillbirth prevention found on the website? You might just save a baby. And if each of us did this, we would be honoring those babies we couldn’t save.
This month we are honored to have a guest blog by someone who knew all too well the story about stillbirth – she has lived it her entire life as she watched her father push forward his passion for preventing these needless tragedies. And then she had her own brush with tragedy……. read on….
Guest Blog by Catherine Alford
I’ve been hearing all of your stories – your stories of loss, love, sadness, and eventual triumph – my entire life. My dad, Dr. Jason Collins, started his research on umbilical cord accidents when I was only 5 years old. In fact, I was so used to him staying up late every night looking at heart rate strips that I used to draw him pictures of them and tape them to his bedroom wall so he’d see them before he went to bed. It was far more exciting than drawing him stick figures, and he thoroughly enjoyed them.
My dad has been trying to solve this problem, this terrible, preventable problem of umbilical cord accidents for such a long time. It has been his life’s work, his obsession, and his amazing gift to medicine. When I was a kid, we had a phone in our kitchen connected to the wall with a really long cord. This was back before cell phones of course. Every time other physicians would come over to the house, my dad would try to explain what happens to a baby in utero with a UCA using the phone cord. He would wrap that cord around his arm, twisting it and turning it, trying to explain. “Torsion!” “A true knot!” These moments, these lessons, slowly seeped their way into my mind. I knew at a young age that having a full term healthy baby was truly a miracle.
Needless to say, when I got pregnant for the first time, I was nervous. Very nervous. I was living abroad at the time away from my family and away from American healthcare. When my husband and I went in for an early ultrasound at 5 weeks to confirm the pregnancy, we got the shock of our lives and found out we were having twins. After the shock wore off and I had time to compose myself, the first person I told was of course, my dad.
“Dad,” I said, “You’re not going to believe this, but I’m having twins.” His immediate response was, “Oh cool! Twins are so fun to look at on ultrasound.”
My dad was there for me every step of my pregnancy. I obsessively e-mailed him pictures of every single ultrasound, even when my twins were just tiny little circles, even when he and I both knew there was nothing he could do to save them if something went wrong.
I wish I could say I enjoyed my pregnancy, but I couldn’t. Whether it was a blessing or a curse, I was fully aware of the risks. I knew about the unthinkable, the unfortunate reality that many of you have faced in your lives. To top it off, carrying two babies at once meant more risks, more chances for the kids running out of room, more opportunities for cord compression. I tried to stay calm and tried to enjoy it, but it was hard. Both my husband, who is a medical student, and I just wanted to make it to the end and hold our babies in our arms – alive.
I moved back to the United States during my second trimester with plenty enough time for my dad to spoil me with steak dinners while my poor husband studied for a massively important medical school board exam. I received countess ultrasounds both from my regular physician, my maternal fetal medicine doctor, and my dad. I knew that if anything bad were to happen, I would know about it.
I know my dad though, and I know he was nervous about my pregnancy even though he tried not to show it. When I told him how happy I was to make it to the viability point of 24 weeks, he just calmly said, “Let’s just try to make it to 28.” When I told him I was having one boy and one girl, he let out the funniest laugh, which I got on video. He was slowly getting attached to the babies as a grandfather and yet remaining detached as a physician observing what could potentially be a problem.
At 30 weeks, my dad gave me a heart rate monitor so he could monitor the babies’ heart rates remotely, like he has for many of his Pregnancy Institute patients the past two decades. Every night, I would monitor my daughter for 30 minutes and my son for 30 minutes, sending my dad photos of the strips every five minutes. I had to put up with his commentary of course. When I had a contraction he’d say, “Yeah. That looked like a good one!”
At around 34 weeks, he started noticing a bit of cord compression on my daughter’s strip. He monitored me even closer, all while I was being seen by my regular physician every week. Throughout the day, I counted kicks, making sure I could feel both babies.
Then, the morning I hit 35 weeks, it happened.
I counted my daughter’s kicks but I couldn’t feel my son. I shot straight up in bed and yelled at my husband hysterically: “I can’t feel him!”
I went straight to the guest room to get attached to the heart rate monitor while my husband listened for his heart beat with his stethoscope. A wave of relief hit us when he found it. He was there. Alive. He just wasn’t moving.
I hopped in the bathtub since both babies got really active in the warm water. Again, my daughter kicked around happily but nothing from my son. After I ate a pop tart to try to wake him up and still nothing happened, I told my husband we were going to the hospital.
I didn’t wait for an okay from my doctor. I didn’t hesitate. I knew from hearing all of your stories that time was of the essence. I called my doctor to tell her I was on my way, then I called my dad. When I got there, I was contracting every 7 minutes and in labor. I hadn’t even noticed because I was so focused on trying to feel my son kick.
At the exact moment my doctor told me that I was going to be having the babies that day, my dad was texting me frantically ordering me to stay at the hospital (my husband sent him a picture of the heart rate strip, and he knew it was time!) I was able to calmly call him and say, “Yes, Dad, my doctor agrees! We’re having the babies now!”
On March 23, 2014 at 11:35 A.M. my son was born alive and healthy. A minute later, my daughter was born also alive and healthy. After a bit of a rough start and two weeks in the NICU, they came home with us. They’re now almost one, crawling all over the house and all over each other. They love to FaceTime with my Dad. They know his voice and try to clobber the phone when they see his face on it.
I know I’m fortunate because my story has a happy ending, and I’m confident that happy ending came because of my nightly remote FHR monitoring.
I also had the world’s best doctor and the world’s foremost expert on UCAs watching my every move during my pregnancy, and I’m especially blessed because that same doctor is my dad.
Catherine Alford is the daughter of Drs. Jason & Candace Collins and is a well rounded professional in the digital space who is best known for her ability to write about difficult topics in an engaging way. With a formal background in American History, Catherine worked for years as an historian before she began to focus her attention on her love of blogging and building online businesses. Currently, she is a professional blogger for numerous websites and is actively growing her online reach. Read her blog – Budget Blonde. Her most important job however is Mom to her beautiful twin son and daughter.