Everybody hates clichés, platitudes, excuses, and empty words. And if you have had a stillborn child, you have heard plenty of all of the above.
These comments may come from our friends, family, health professionals, or even ourselves at times. We try to make ourselves feel better or to justify what has happened. However, sometimes it’s not enough to just feel bad or to be sorry.
I’ve talked before about the clichés we hear along the grief journey. Today, I’ve been thinking about the excuses. They all come from well-meaning people. The problem is when we just allow the excuse to be the final word.
Some of the more common excuses I hear from health professionals:
- “Sometimes bad things happen.”
- “We’re not God.”
- “I can only do what has been proven.”
- “There isn’t proof it could help.”
- “We just don’t have good information about that.”
All of these things may be true; however, we can’t let that be the end of the conversation! Where are the people who say that 26,000 babies dying every year in the United States (over half of them at a viable gestational age) is NOT ACCEPTABLE!
We must force the dialogue and work to keep going.
Our society and experts can do incredible things when we put our minds to it! We send machines to other planets. We have nearly conquered HIV/AIDS and it is certainly no longer a death sentence after only a few decades since its identification. We can talk to people on the other side of the planet easily and inexpensively. The list goes on and on. Why haven’t we made better progress toward saving these babies – a problem that has been an issue for centuries?
Sometimes it isn’t enough to just WISH it didn’t happen. Sometimes we have to actually DO something about it. Our actions will speak louder than our words.
Your contribution may be big or small – but if we put all of our efforts together – we could make significant change!
What can YOU do?
For starters, I encourage everyone to attend the Stillbirth Summit 2014 in Medina (Minneapolis), Minnesota on June 19-21, 2014. Be part of the conversation and take your voice out into your own community! This unique event allows all to learn more about the research that is being done – but it will also focus on moving the issue forward. You have the opportunity to participate in discussions and events that will create real action toward our goals. The Stillbirth Summit is open to health care professionals, researchers, families of stillborn children, stillbirth advocates – everyone who wants to see the national and world-wide stillbirth rates start to drop significantly and soon! In addition, we will learn about what we can DO to better support families enduring a pregnancy loss.
We hope you will join us! We also hope you will make a special plea to your own health care providers and encourage them to participate in this event.
First, you can take brochures to your OB, midwife, labor and delivery unit, mental health professionals, social workers, clergy and spiritual advisors, etc. Tell them your story and how much it means to YOU that we support those that passionately seek the answers! Let us know you need brochures to distribute at firstname.lastname@example.org! Details about the Stillbirth Summit are available here
Next – you can be sure to watch Return to Zero, the first major motion picture to look at the grief a family endures after a stillbirth. And encourage your friends and family to watch, too! You can find details here.
Third – Host a fundraising event for a stillbirth organization. These efforts can be large or small and can reflect your interests, desires, relationship with your child, or any other aspects that are important to you. If you have questions about how this can be done, would like some suggestions, or would like to consider donating to Star Legacy Foundation, please contact us at email@example.com.
Fourth – You can donate items to be given to families beginning their grief journey. This can be burial gowns, blankets, hats, bears, etc – anything the family will treasure as they say hello and goodbye to their child. Contact us if you would like to know more firstname.lastname@example.org
Fifth – Do your online shopping through igive.com or smile.amazon.com! Both of these sites allow you to send a portion of your purchase price to the charity of your choice – without any cost to you! Star Legacy Foundation receives a nice quarterly check from both organizations based on purchases by online shoppers like you!
The options are limited only by our desire and our creativity! But the more we do, the better chance we have at making a difference and getting the attention of others who can make a difference!
Our actions will speak louder than our words.
How will you put your support into action?
The first was a father wanting advice for helping his wife after she had recently delivered their stillborn child at 41 weeks. The cause was determined to be a cord accident.
The second was a woman asking for prayers for a friend’s newborn child. During delivery, the umbilical cord was compressed and the child suffered hypoxia (lack of oxygen). The baby is currently in the NICU undergoing body cooling in an attempt to reduce the swelling in his brain.
The third was a woman who recently delivered a baby in Japan. Ultrasounds were a routine part of every prenatal visit during the third trimester. At the 36 week visit, they noticed the baby had several umbilical cord wraps around the neck and arm. Her OB showed her the concern, they did some extra tests to identify if the baby was in any distress, and then a cesarean section was scheduled at 38 weeks of gestation to avoid the baby having complications from the umbilical cord issues during a vaginal delivery. She said it hadn’t occurred to her that her pregnancy might have been managed differently in the US.
A few major problems stand out to me with these stories.
Families are told every day that umbilical cord issues don’t cause problems. Yet, this is also the most common answer families are given when they ask why their child was stillborn. This hypocritical approach is not acceptable. If cord issues truly cause birth injuries and death, then that needs to be recognized, accepted, communicated, and addressed. If they don’t, we need to stop attributing such a large number of poor outcomes to this cause. It is true that many babies are born healthy despite umbilical cord issues, but this is not the same as saying the cord issues aren’t a cause for concern.
Providers will often say cord problems are not concerning, but what they actually mean is that they don’t think they should alter the plan or don’t know what to do differently – so they simply offer false reassurance. In the event of a poor outcome, a cord issue might really be the cause, but “cord accident” may also be the easy answer because it is accepted as something that “nothing” could be done about.
The woman from Japan proves that cord issues can be addressed. It is impossible for us to guess if she would have had a poor outcome if they had chosen a different approach, but she and her providers chose not to gamble with her child’s health/life and took a route that they believed offered the least amount of risk. This does not seem that radical to me. I had similar thoughts and questions during my subsequent pregnancies. My children all experienced different types of complications that were only identified because I was considered ‘high-risk’ (and that was only because of my previous stillbirth). Each of these complications were managed and monitored closely. They were delivered when the risks and benefits of their issues and prematurity flipped so that they had a greater likelihood of survival outside my womb than in it. And they are all 3 happy, healthy beautiful children today. Again – no way to know what the outcome would have been otherwise. I’m eternally grateful for their health, I’m scared when I think about what other outcomes were possible, and I can’t help but wonder if their oldest brother would have survived if he had received the same level of care.
Likewise, we have no way of knowing if recognition of the cord issue could have prevented the stillbirth of the child in the first email. But these are what-ifs that this family (and many of us) will live with for the rest of their lives. The providers may be left with the same questions, How many babies MIGHT we be able to save or improve the outcome for if we identify potential problems before the mom or baby is symptomatic?
In the email from Japan, the cord issue was identified because she had a level of care that is not routine in the US and the provider was willing/able to offer a management plan that is not readily accepted in the US. Americans have insurance companies wanting to reduce the number of tests and procedures, lawyers wanting to eliminate provider liability, and special interest groups pushing their agendas into the medical decision making process of families, providers, and hospitals. The baby in the NICU is a perfect example that everyone involved might have benefitted from knowing in advance about a potential cord issue and management beyond watching and waiting. The stress, costs, and potential long-term effects for this child/family make some extra tests and a possible c-section seem pretty minor. The family who experienced a stillbirth didn’t know what cord issues could do or that they might be preventable until after their child had died. The family in Japan was shown the potential issue and allowed to have a discussion with the provider about any risks and benefits of various options. Together, they developed a plan that they felt comfortable would reduce the risk as much as possible. Again, this seems rather simple to me.
I routinely hear stories of heath care professionals opting not to look for or to tell families (if they did look) about potential umbilical cord issues. Their rationale is this – “Why scare the family when I can’t do anything about it?” This is unbelievable. The family has a right to know regardless of the options. Most people are understanding and realistic about what medicine is able to provide. This would not be the first time that families are given information about a diagnosis that doesn’t have easy options.
But the next, obvious question is – why can’t we do anything?
I understand that we may not be able to unwrap a nuchal cord or undo a knot in the cord. But we can manage the pregnancy differently from that point forward. We do it every day with many other issues. Why not this one? When we see sensational stories on the news about significant anatomical abnormalities that are corrected in utero, it seems unreal that we throw our hands up when it comes to issues like cord and placenta issues.
Medicine is not black and white.
What works for one person may not be the best solution for another.
- I am frustrated by recommendations and policies that assume all situations to be identical.
- I am frustrated by providers choosing to keep their heads buried in the sand instead of looking for warning signs or risk factors because it makes their job easier or reduces their liability or because the odds are in their favor.
- I am frustrated by health care professionals not involving families in health care decisions after an honest discussion of all information available.
- I am frustrated by insurance companies or other parties influencing medical decision making more than the physicians and the families directly impacted.
- I am frustrated by providers, organizations, and policies that ignore the fact that obstetrics is monitoring the health of TWO patients.
To me – these are some of the real problems with umbilical cords…and too many other causes of miscarriage, stillbirth, birth injury, and neonatal death.
We need more providers who are willing to do what makes sense
for their patients with their patients.
We need more families to communicate their desires.
We need more awareness of these issues so that every baby, mom, and family
get the absolute best that medicine can provide.
IT. COULD. BE. WORSE.
Whenever I hear someone start a sentence with these four little words, I cringe and start to brace myself. I know I am not alone that others have tried to comfort me or relieve my grief by pointing out how things could be worse.
“It would be worse if he had died at home.”
“It would be worse if he had died in the hospital.”
“It would be worse if you had other children to worry about.”
“It would be worse if you didn’t have other children.”
“It would be worse if you couldn’t have more children.”
“It would be worse if he was older.”
“It would be worse if he were younger.”
“It would be worse if he had been sick for a long time.”
“It would be worse if you hadn’t had a chance to say goodbye.”
“It would be worse if ……”
Why do they think these comments are helpful?
I am a firm believer that it, in fact, COULD always be worse. That does not, however, mean that the current situation isn’t bad! In fact, it’s miserable. I often wanted my emotions to simply be validated. That’s all. I didn’t need someone to point out what they thought were the positives. I knew they were there. But I still needed to be sad.
At one point, I began to feel guilty for being sad because I was being reminded on a regular basis how many things I had going for me. Yes – I’m fortunate in many ways, but I was also living a nightmare. It made me feel like I didn’t deserve to be sad.
Once we hear these comments enough, we may even start to believe them. I tried to tell them to myself to keep from crying in public or to pull myself out of a bad day. This was a coping mechanism that others had given to me, so I felt forced to use it because nothing else I did seemed to be ‘working’.
When talking to people who are grieving, our natural instinct is to make it “better”. Why? Many times, the kindest thing we can do is validate their emotions. It also validates their love for the person who is no longer here. We wouldn’t dream of taking their love away, but we often do so by trying to take their grief away.
It is not surprising that the general public doesn’t know how to handle bereaved parents. They are living a reality that our brains and hearts won’t let us even conceive until we don’t have a choice. Finding things that would make the situation worse somehow makes us think we are lessening the burden.
In a larger picture, our society doesn’t recognize pregnancy loss as a significant issue – because of the pervasive idea that IT COULD BE WORSE.
Loss is loss. Grief is grief. Pain is pain. Why do we feel the need to compare losses? We do so in an attempt to justify things we don’t have answers for. We do so to lessen our own sadness. We do so to prevent ourselves from being with another person in the most difficult steps of their journey.
We can’t take the pain away from the bereaved. But we can stand beside them and show them that their loved ones, their love, and their grief matters. This may take the form of simple or grandiose gestures. The important part is that we take the step toward their grief instead of away from it.
Don’t push my grief away because it makes you uncomfortable. Its’ purpose is to help me find an inner strength to survive. Just be there and walk beside me, silently.
Once upon a time, there was an old man who used to go to the ocean to do his writing. He had a habit of walking on the beach every morning before he began his work. Early one morning, he was walking along the shore after a big storm had passed and found the vast beach littered with starfish as far as the eye could see, stretching in both directions. Off in the distance, the old man noticed a small boy approaching. As the boy walked, he paused every so often and as he grew closer, the man could see that he was occasionally bending down to pick up an object and throw it into the sea. The boy came closer still and the man called out, ”Good morning! May I ask what it is that you are doing?” The young boy paused, looked up, and replied “Throwing starfish into the ocean. The tide has washed them up onto the beach and they can’t return to the sea by themselves,” the youth replied. “When the sun gets high, they will die, unless I throw them back into the water.” The old man replied, “But there must be tens of thousands of starfish on this beach. I’m afraid you won’t really be able to make much of a difference.” The boy bent down, picked up yet another starfish and threw it as far as he could into the ocean. Then he turned, smiled and said, “It made a difference to that one!”
from The Star Thrower, by Loren Eiseley (1907 – 1977)
At times it seems as though our quest to bring awareness to the tragedy of stillbirth and other forms of pregnancy and neonatal loss is much to large to conquer. Just the thought of 26,000 babies a year lost each year in the US alone, or 4 million world-wide is mind boggling. How can we possibly make a difference?
The truth is that every storm starts with a single rain drop; every marathon begins with a single step and every life begins with a single heartbeat.Each one of us has the power within us to influence change and to encourage others to do the same. Commitment carries us from the first effort to the next, and the next after that. Our efforts although they may seem small influences others to get involved as well and the momentum swells. Here are a few examples how the Power of One can make a difference…..
- Deb Haine Vijayvergiya of New Jersey and her husband lost their daughter Autumn Joy at 22 weeks to stillbirth. Determined to make a difference, she single handedly pushed for a piece of legislation in her state that will change the way things are done! She did all this by learning the ropes of legislation, talking to countless individuals and working side by side with elected officials and their staff to craft the legislation and get it passed. AND – the Autumn Joy Stillbirth Research & Dignity Act passed in the very first year it was introduced - an amazing accomplishment. Read the full story.
- Sherokee Ilse of Minnesota (and now Arizona in the winter) lost her son Brennan to a full-term stillbirth over 30 years ago. Since that time she has worked tirelessly to support families in their darkest days. The trauma of her own stillbirth when she barely saw her newborn son and left her with so very many regrets motivates her to make sure that families have every opportunity to make a lifetime of memories in a few short hours or days. She has authored numerous books or various aspects of the grief surrounding pregnancy and infant loss; she speaks to anyone and everyone on ways they can avoid those awful regrets. Her bio goes on and on but again, she is an example of how the power of one can make a difference. Visit Sherokee’s website.
- Grandma Mary buried two babies over 50 years ago to stillbirth. She heard about 11 Angels and their programs of parent to parent support for families. Although she is elderly and in a care center, she knits tiny gowns, caps and blankets that 11 Angels gives to families to be sure their precious babies can be buried in clothing that fits. That’s the Power of One!
“A single, ordinary person still can make a difference – and single, ordinary people are doing precisely that every day.”
The local stores have been reminding us for weeks already that the holiday season is upon us. It is now November – the month we give thanks. However, for families who have experienced the death of a child, it can be almost impossible to find reasons to be thankful. This is especially true for families who have suffered a loss in the last year.
Families who have endured infertility would love to see a Christmas morning through the eyes of a child. Families of stillborn children wish they were giving thanks for the healthy arrival of their baby. Families who have lost older children identify the contrast between the holidays last year and this year. The scenarios are endless, but they are all painful and heartbreaking.
The “stages of grief” often refer to emotions such as denial, shock, anger, guilt, etc. None of these emotions lend themselves to thankfulness.
How are families supposed to deal with their loss while the rest of the world appears to be absorbed in joy?
Just as grief is different for every person, our needs during the holiday season will be different as well. We may want to stay busy or do nothing. We may want to surround ourselves with family and friends or spend time alone. We might find comfort in familiar activities, or they may be too painful. Even more, what sounds like a good idea initially may become too difficult. There is no way to predict or prepare. All we can do is the best we can.
If you know someone who is grieving this holiday season, be there for them by understanding and supporting their needs during this challenging time. Avoid platitudes or clichés that are intended to be helpful, but, instead, put pressure on the grief process. Acknowledge their emotions and be willing to change plans if needed.
If you are grieving, the holidays will not be what you had hoped or expected. Be kind to yourself and give yourself permission to do what feels best to you in the moment. There is not a manual or map for the grief journey, so take the path that comforts you, respects your grief, and honors your loved one. Finally, don’t hesitate to ask for help. Most of us are surrounded by people who are willing and eager to help if we identify what they can do. It may be big or small, but if it makes your day a little easier or puts a smile on your face for a few seconds, it’s a gift.
This holiday season, I wish you all comfort, gentle days, and the love of friends and family.
And most of all, you were sure it would be impossible for you to function as a whole human being not buffeted by the waves of sorrow that swept over you in the early days of your tragedy. But you will. You will do all that and you will do more. ~ Harriet Schiff
October is National Pregnancy and Infant Loss Awareness Month. Many of us are participating in events or remembering our children in our own special ways. These events are heartwarming and an opportunity to support each other. This year, I’ve been wondering if they are more than that.
I used to think that government proclamations were a simple gesture to recognize the struggles faced by our society. I didn’t ever see a personal connection to it. It wasn’t that I didn’t know people with breast cancer, autism, or any other cause. I just didn’t stop to think about if I could or should do something about it.
When I look at the title National Pregnancy and Infant Loss Awareness Month, the word AWARENESS jumps out at me. What is awareness? What does it look like? Is it a simple acknowledgment? Is it a full-blown public media campaign? Is it something in between? Is it even necessary?
I’m not sure I completely understood the value of awareness until recently. But awareness is one of the most powerful tools we have. It can educate the public and health professionals; encourage financial support of research or care programs; inspire advocacy; break down stereotypes, myths, or taboos; honor the memory of loved and missed babies; and provide encouragement for families on a grief journey. Obviously, there is much that needs to be done and awareness could be a key to all of these things and more!
You may be thinking, “I don’t have the time/resources/talents/ability to make a difference.” I know I have thought this before. At times, the issues can be overwhelming. This is one of the most important reasons why we all need to work together and create that awareness. The issue is too big for any one person or even one organization to ‘fix’ alone. Working together, however, we can make a significant difference! Your contribution can be anything you want it to be. The important thing is that it comes from the heart and is done to create awareness for these babies and their families.
For example, you could:
- Attend a memorial walk/event such as the Let’s Not Be Still! Stillbirth Awareness Run/Walk or check this site for a great list of events in various areas.
- Call a friend who has experienced a pregnancy or infant loss to say you thought about them and their child today.
- Make a donation to your local hospital or a pregnancy/infant loss organization in memory of a child to support others enduring pregnancy and infant loss
- Join the Action for Stillbirth Awareness and Prevention (ASAP) Coalition.
- Tell a friend or family member about healthy pregnancy initiatives and safe sleep practices for infants.
- Contact your legislators to encourage support of the FMLA changes, the King Stillbirth bill, and the Pallone SIDS/SUID/Stillbirth bill.
- Write a letter to the editor of your local newspaper about Pregnancy & Infant Loss Awareness month.
The possibilities are endless, but the important part is that awareness can be big or small, loud or quiet, expensive or free, aimed toward society or an individual, organized or impromptu. Some of the most impressive works of the last two centuries have started in small ways or small locations. Don’t underestimate the ripple effect of your actions!
How will you be creating awareness this month? Feel free to share your ideas with us – or ask for help if needed. But make this month different by creating awareness in your own way. Together, all of these efforts will come together for true National Pregnancy and Infant Loss Awareness.
In the first few days after the stillbirth of my son, it seemed incomprehensible that I would ever be able to function without dissolving to tears every time I thought of him – which was every few minutes. Other people would give me platitudes like, “Time heals all wounds”, and “You only miss him because you love him”, but it didn’t change the fact that I couldn’t have dinner with my husband, go to the grocery store, or even brush my teeth without being interrupted by floods of tears and sobs that took my breath away every time I thought of him. It was easier to imagine that this was my new existence than that I would ever resemble “normal” again.
I remember the day I went a full 24 hours without crying about my son. I can’t tell you when it was or how long it took me to get to that place, but I can tell you that I remember the moment like it was yesterday. I had been looking forward to that day for many weeks. Yet, when I made the realization that I had muddled through an entire day without falling apart on the outside, I was devastated.
I thought it would be a welcome sign of “progress” in my grief journey. I thought it would mean that I was “better”. I thought it would feel like my “normal” again. It was none of those things.
I was unbelievably sad with my new-found ‘progress’. One of my biggest fears was that he would be forgotten. I had already seen casual friends and acquaintances forget that he was a part of my life. I had seen good friends and family members get back into their usual routines and appear that my son’s death didn’t interfere in their activities or happiness. But now that I was seeing it in myself, I was terrified that I, too, would soon forget him. The smell of his skin, the feel of his smooth forehead on my lips, the weight of his body in my arms, the part of my heart that he took with him to a better place.
I was confused. This was supposed to be a milestone that made me feel better, not worse. I felt guilty that I had moved that far in my journey in such a short time (I still have no idea when it was – but it instantly felt too soon). I felt guilty that I didn’t miss him “enough” to cry about him today. But yet I knew I couldn’t continue crying every day. And I knew that the world around me expected me to reach this day.
How could ‘progress’ feel so horrible?
Just as all the days leading up to that one, I had no choice but to accept my feelings and emotions for what they are and keep putting one foot in front of another. In many ways, I am still doing that same exercise 9 years later.
The difference now is that I have learned to embrace the guilt, the pain, and the joy. I understand that ALL of my emotions in this regard come from my love for my son. Not in spite of it. I know that I will NEVER forget him. I have had time to work through the guilt, recall memories with fondness, and be proud of my son. I now realize that much of the grief journey requires creating a new ‘normal’.
I’m sure from the outside looking in, my life looks anything but normal to most people. But that’s ok. It’s MY normal. I wouldn’t be who I am without all of my life experiences – my childhood, my family, my marriage, my career, my living children, and my angel in heaven.
I recognize that my grief “progress” is not measured by how much I love or miss my son. It is measured by my ability to incorporate that experience into the rest of my life. And I can’t imagine my life today without any of my children. I love all of my children more than I can express, I miss my first child more than I could ever describe, and I love what each of them has taught me. It is not my grief that has helped me to progress – but my motherhood. And I feel blessed.