Umbilical cord accidents continue to be the number one topic I hear about in emails and phone calls from pregnant or grieving families. The reasons for this are many. I do not claim to be an expert on umbilical cord issues, and the topic has been poorly researched. However, I struggle with the ‘facts’ that are often used without telling the whole truth. Here is my understanding of the most common questions or comments I hear regarding cord accidents.
The Whole Truth
It is true that a significant number of babies are born with cords around their necks and the majority of them do not show any signs of distress. This does NOT mean, however, that cords cannot cause problems! To tell someone that cords can’t be problematic because they aren’t ALWAYS problematic is misleading.
Not EVERY person who smokes tobacco will die of lung cancer. Does this mean smoking doesn’t cause lung cancer? Of course not. Does it mean we don’t need to tell people who smoke of the dangers? Of course not.
If your baby was born with an umbilical cord issue and your baby is happy and healthy, PLEASE count your blessings and consider yourself fortunate to have landed on that side of the statistics. We are not all so lucky. Most of all, please don’t say my baby’s cause of death isn’t significant or worth worrying about just because it didn’t happen to your baby.
Should I worry about the ‘nuchal’ cord?
When we hear about cord issues, most people think about or are talking about nuchal cords. This is when the umbilical cord is wrapped around the baby’s neck. That placement alone is not necessarily the problem. It is a problem if it is wrapped tightly. However – not for the reason most people think. A tightly wrapped nuchal cord is not a concern because of the baby’s neck (before birth, the baby does not get oxygen through the trachea into the lungs). It is a concern because of the compression that is put on the cord itself. The umbilical cord IS how the baby gets oxygen before birth. So – a nuchal cord that is tight enough to restrict blood flow through the cord between the placenta and the baby puts the baby’s oxygen supply at risk. However – the same is true for any position of the baby and umbilical cord that compresses the cord and reduces blood flow. This can occur around a limb, around the baby’s body, as a knot in the umbilical cord, with multiple nuchal cords or wraps, as a poor insertion point into the placenta, between the baby’s body and mom’s, and so forth. Nuchal cords get the most attention, but that is just one type of potential cord issue.
My doctor says cord accidents don’t cause problems and then my doctor said my baby was stillborn due to a cord accident.
I am the first to admit that the research into umbilical cord issues and how to manage them is lacking. Much more is needed. But the problem is compounded by the medical community not even being able to agree if this is a legitimate cause of death. The part that is most frustrating to me is that many providers use both of the above statements when it fits the situation.
According to the Stillbirth Collaborative Research Network (SCRN) studies, 11% of all stillbirths were determined to be caused by umbilical cord issues. By their own description, this is probably a low number because they had very strict conditions for coming to this conclusion and required definitive pathologic evidence of such.
It can be extremely distressful and frustrating to parents to hear during the pregnancy that umbilical cords don’t cause problems and then after the pregnancy that the cause of their baby’s death was an umbilical cord accident. We can’t have it both ways. This gives the appearance that providers either don’t know about the issue or they are taking the “easy” way out. (Meaning it’s easier to reassure parents and play the odds during the pregnancy.) It’s also easier after a stillbirth to provide an “answer” that is easy for families to understand and accept. The belief that “nothing can be done about umbilical cord issues” doesn’t help because it allows providers to use the line that “these things just happen”.
If cord accidents DO happen, then why are we told they don’t? If they DON’T happen, then why are we told they do?
Why should I say anything about a cord issue?
Many families find out accidentally or after the fact that their baby had an umbilical cord issue. Most providers I talk to tell me that they will not tell families about the issue. If they do tell them or the family finds out, the provider will minimize their level of concern. Why?
Most providers say they ‘reassure’ their patients that cords don’t cause problems because they don’t want the mothers to worry and they can’t do anything about it anyway.
First – your job is not to keep me thinking that everything in pregnancy is bubblegum and unicorns. Your job is to assess me and my baby and provide your professional recommendations about how to protect us both from harm.
Second – why aren’t you the ones asking for studies to be done that would help you have treatment options?? Our medical community should be leading the charge in demanding we learn more. The advancements we have made in the last few decades in almost every area of medicine are incredible. Why isn’t stillbirth (and cord accidents in particular) one of them? The lacks of research and treatment options directly affect you, your patients, and how you practice.
Third – If you don’t know what to do about a condition or don’t feel like there are good options, tell us that! We have the right to know what is going on with our bodies and our babies. Let us be a part of that conversation. Other areas of medicine don’t get away with this.
Cords don’t get tight with labor or cause the baby to be in distress
Umbilical cords can become taught during labor depending on many forces including the length and position of the umbilical cord and the position of the baby. All the ways a cord can be compressed or compromised during the pregnancy can happen during delivery as well. Any change in physiologic status can cause fetal distress – including hypoxia secondary to cord compression. Not every baby who experiences distress during labor has a cord issue, but many do. There are other causes of distress as well, but that does not mean cords aren’t one of them.
I personally had the experience of watching my baby demonstrate this effect. While on a fetal heart monitor and having an ultrasound completed, we were able to see my baby’s position compress the umbilical cord. Within about 8-10 seconds, my baby’s heart rate started to decelerate. When she moved and the cord compression was relieved, her heart rate returned to normal. Once her heart rate began to decelerate and she was not able to relieve the compression enough for her to recover, she was immediately delivered. Because of this experience, I believe 100% that cord compression can be a cause of fetal distress.
Cesarean section is the only cure for a nuchal cord.
A newer question I have been asked is if a C-section is required to save a baby when a nuchal cord is identified. I’m going to discuss this in terms of all cord issues (not just nuchal for the reasons mentioned above). A C-section does not necessarily prevent cord issues, and it is certainly not the only way to reduce or manage cord complications. There are situations where a provider feels this gives the mom and baby the best chance of positive outcomes. I am in support of any decision made with the family for those reasons. I also believe vaginal deliveries are possible when cord issues are present. In this case, knowledge about the issue, close fetal monitoring, and access to emergency care can help provide reassurance and warning about emerging symptoms.
There are many, many complex factors that must be evaluated when making the decision to have any surgical procedure. I am not a fan of surgery whenever possible, but I also firmly believe that surgery is not the worst thing that can happen to someone. This is simply another treatment modality that can be evaluated and considered. Sometimes we must choose the lesser of evils.
Umbilical cord accidents don’t happen very often.
This is a statement made only by one who has never been affected.
And I would like to know what your definition is of the word “often”.
Stillbirth in general occurs 26,000 times every year in the United States. If we use the SCRN numbers of 11% of stillbirths being caused by umbilical cord accidents, that would indicate that 2,860 babies will be stillborn this year due to umbilical cord accidents. That is more than the number of SIDS deaths per year. That is significant.
And these are the prenatal deaths. What about the babies with umbilical cord accidents that only survive minutes or days? What about the babies who develop cerebral palsy or other conditions as a result of the hypoxia suffered during an umbilical cord accident?
Which leads me back to where we began – we need more research to understand, manage, and prevent this cause of poor pregnancy outcomes.
Intrauterine Growth Restriction (IUGR) is receiving a lot of attention recently as it relates to perinatal loss. I am very encouraged by this and the promising studies that are being done. A recent video has been circulating through social media that highlights the issue.
I’ve been getting many questions from parents about what IUGR actually IS. I think it’s a very important question.
The most important thing we need to understand about IUGR is that is it a symptom, not a diagnosis.
Providers will often provide this as a diagnosis if there is a poor outcome in a pregnancy or even identify it as a cause of death. Being small does not, in itself, post a lethal problem. But WHY a baby is small very well could be a serious problem.
Studies have indicated that more than half of all stillborn babies are growth restricted. This tells me that these babies had issues going on through the pregnancy that were limiting the baby’s ability to develop and grow appropriately – and, ultimately to survive.
Growth restriction, by definition, requires us to recognize that a baby’s growth pattern is not following expected norms. In pediatrics, we do this with every single well-child visit from birth to adulthood. If a child is at the 75th percentile for his/her age and is consistently at that mark, we consider that appropriate growth. However, if a child is usually at the 75th percentile and is suddenly down to the 25th percentile – we are going to be investigating because that is a significant change. Growth charts can be utilized for fetal growth in the same way – and usually are when IUGR is suspected and identified during a pregnancy. The problem is when a diaghnosis of IUGR is made from a single assessment. From a single point in time, it is not feasible to identify if a baby measuring at the 25th percentile is acceptable or not. It depends on what the baby has done in the past, but we often don’t have that information.
Most providers and facilities have identified trigger points at the 10th percentile or 5th percentile. If a baby is under those marks, they may be diagnosed with IUGR. This can be problematic because it may mean that we are concerned about a baby that is naturally a smaller person OR it may be that we don’t catch a baby that is very sick until it progresses to this extreme. It is more appropriate to consider a baby “appropriate for gestational age” (AGA), “small for gestational age” (SGA) or “large for gestational age” (LGA) rather than IUGR if we are only looking at data from one assessment These terms simply describe the child’s size without indicating if it is a concern or not. However, it is important to remember that any of these babies could ALSO be growth restricted – but we need more information to know. Once a baby is born, if we identify growth restriction (known as ‘failure to thrive’ in the pediatric setting), we will begin looking into potential causes. We look at the sources of the baby’s nutrition, the baby’s anatomy and physical health, the baby’s behaviors and patterns, the baby’s environment, and more. The baby’s size is considered a symptom – not a final diagnosis. We may not be able to directly affect the baby’s growth, but we can address the underlying cause (in most cases) and indirectly improve growth. The growth pattern is simply another vital sign that indicates how well the baby is doing.
This isn’t always the approach to baby’s growth (or restricted growth) in obstetrics. Any baby diagnosed with IUGR should be having serial ultrasound measurements and further testing to identify the cause of the limited growth and the baby’s tolerance of the issues. Examples could include placental concerns, restricted blood flow through the umbilical cord, infection, or genetic or anatomical abnormalities. This information gives the obstetrical providers information about how to manage the pregnancy moving forward.
Probably my biggest frustration with IUGR is that in ‘healthy’ pregnancies, it is only looked for by measuring fundal height (the tape measure of mom’s ‘bump’). This method has been noted in literature to be faulty and neither sensitive or specific. But it continues to be the standard of care because it is easy and inexpensive. I am very concerned, however, that this practice keeps us from identifying babies that are struggling under our radar and we lost a chance to intervene and help them survive and thrive. The technology exists for ultrasound measurements to be taken regularly throughout the pregnancy to better assess baby’s growth.
Many stillbirth families are told that their baby died of IUGR, yet they did not have any idea this was a concern before the baby had died. Further, they aren’t given any information about WHY their baby had IUGR. These are significant omissions that could have implications for parental grief, management of and health of subsequent pregnancies, or for public health stillbirth prevention efforts.
This spring, Star Legacy Foundation held our first essay contest! Potential entrants were encouraged to send in an essay explaining what they would like researchers and health care providers to know about their stillbirth experience and what they have learned in their grief.
Jackie Sondrol submitted the winning entry. Her essay was printed in the syllabus for Stillbirth Summit 2014 in June and we are pleased to share it with you again here. Her words speak to many of us.
Thank you to everyone who participated. We hope to share the other entries in future issues.
We wish Jackie hadn’t joined our ‘club’ just as we wish none of us had. But, we are certainly grateful to have Jackie’s passion, dedication, and inspiration working with us to prevent stillbirth.
Stillbirth – a description, not a diagnosis. It is only after influential organizations reach this simple conclusion that we will move forward in research and eliminate this word from 26,000 families’ mouths annually.
I’ve had many thoughts over the past seven months since my son, Aiden, was born silently into this world but the one thought that keeps circling back is; Why?
• Why didn’t I know this was a possible outcome in pregnancy?
• Why didn’t I have the same level of care as an acquaintance of mine that was considered high risk only because she was over the age of 35?
• Why didn’t I have more testing as part of my routine care to monitor my baby’s well-being?
• Why does a mother have to experience a loss in order to receive better care?
All of these questions hold a lot of weight but combined they have the power to change a course of treatment or care but it shouldn’t have to come to this. It’s time providers take accountability for their level of care and work towards preventing/managing risks associated with stillbirth.
I’ve thought about the risk factors associated with stillbirth a dozen times. I didn’t have any; except now that my baby has been stillborn, I have one risk factor that makes me at risk for a stillbirth and not just 3% like I was before but according to one study; an increased risk up to ten fold. Why then, if every expectant mother has the same risk of having a stillborn, wouldn’t every expectant patient be considered high risk? If we do, in fact, have no indicators that a baby is at risk for stillbirth, then why isn’t a higher level of care given to the fragile condition of the baby in the womb and the expectant mother?
I believe; they are looking in the wrong place. The risk factors give providers a guideline to determine if certain women may be at a higher risk than others but, it seems that more often than not, the baby is the one that needs to have their own set of ‘guidelines’ to be monitored as well. How do we prevent/manage something if we aren’t even taking the time to look for it?
It all begins with education and awareness. In the weeks following the death of my son; my nurse told me, “These things usually don’t happen and especially not in the third trimester.” It was then that I knew education was lacking even in the medical field.
This realization was the start of my own awareness efforts. I started Aiden’s Wings of Awareness to bring forth awareness regarding pregnancy and infant loss and to educate others about how often it occurs, needlessly, in the United States each and every day. If even one life can be saved, it is worth every minute. I challenge you to be your own advocate.
“Every life, no matter how fragile or brief, forever changes the world.”
My mind is still spinning from the incredible presentations and discussions at Stillbirth Summit 2014! There were a few ‘themes’ that emerged from the dialogue. Some were just questions that were asked more than once. One of those questions was
“Where Are The Health Professionals??”
I, too, was discouraged by the number of health professionals in attendance. To those that DID come – THANK YOU from the bottom of my heart. For taking the time, committing to your littlest patients and their families, and engaging in discussions that hope to make a difference. Your presence does so much good for the hearts of grieving families.
I know that providers are often concerned that patient-driven events are “sob fests” where they will hear one person’s tragic story after another. I believe there is much to be learned from events with that type of program. However – that isn’t what this conference is! A quick glance at the esteemed panel of presenters will prove that some of the stillbirth world’s brightest, most passionate, and most current researchers from around the world were here to work together and with all of us. I was so happy to hear from almost every health professional in attendance that this event was worth every minute of their time. Interestingly, they also asked the question about other health professionals. “Where are our colleagues?”
As a health professional myself, I have taken their ‘side’ many times in these discussions.
- I understand that they are very busy people with many demands for their time and resources.
- I understand that they really do want the best for their patients and don’t try to cause further heartache.
- I understand that there are systematic challenges in how they are trained or receive updates through accepted channels (especially in the area of perinatal loss).
- I understand they are often caught between their patients, the extended families, the hospitals, the law or other health policies, insurance companies, and other organizations.
I am also a stillbirth parent and I have grown very tired of the excuses and the platitudes. It’s hard for me to imagine health care professionals as a group being “ok” with 26,000 stillbirths every year in the United States alone! Yet, that is what parents hear when they are told that “sometimes these things just happen.” It’s hard for me to imagine a single health professional telling their patient that this loved child was a practice run. Yet, that is what thousands of parents hear when they are told that “we’ll do better next time”. It’s hard for me to imagine a health professional who was ok getting through medical school or nursing school or psychology training with “D” grades. Yet, that is what parents hear when they are told their provider followed the minimum standard of care.
I’ve heard all the excuses.
- Yes – stillbirth is a complicated subject.
- Yes – stillbirth is under-researched and you need more data.
- Yes – stillbirth is a difficult subject to talk about.
To me – these excuses point out all the reasons why you should want and demand more!
These are the reasons we (the families) want to work WITH you!
- You are the people at the bedside when families are devastated with bad news.
- You should want answers.
- You should want more research.
- You should want a dialogue that makes this subject easier to address.
- You should want tools for prevention and tools for bereavement support.
- These things would all make your job easier and reduce the number of families who endure these tragedies.
The easy route is to wait on the sidelines and expect someone else to take leadership and create simple instructions. That is accepting status quo. And I expect better from the health professions. I am tired of defending health professionals who aren’t interested in defending their patients. There will be many more opportunities in the future to become involved. If you can’t wait – let me know and I can help you find a way to utilize your skills, expertise, and resources. Or – I can put you in touch with someone who can.
The time has come that if you aren’t willing to be part of the solution,
you are part of the problem.
BE A PART OF THE SOLUTION.
As I mentioned in my last blog, coping with a pregnancy after a loss are among the most commonly asked questions we get from stillbirth families. Primarily, the questions we get are how to work with the physicians and midwives to manage the subsequent pregnancies. My last blog focused on the anxiety and emotions that come with pregnancies after loss. This time, I will try to address the medical management. This is a difficult topic because every pregnancy is very different, and it all comes back to the individual provider’s approach.
- My first suggestion is to talk to your OB either before becoming pregnant or as early in the pregnancy as possible to discuss what you all expect and plan to do through the next pregnancy. It is important that the family and the provider clearly understand the needs of each other and can all feel comfortable with the plan. If this isn’t possible, it may be an indicator that the family should find another provider to care for the next pregnancy.
- Next, do what is possible to control, manage, or eliminate any medical concerns for the mother. This, obviously, isn’t always feasible, but it is preferable whenever possible. Many parents choose to have genetic testing and counseling done at this time as well – particularly if a chromosomal issue was known or suspected to have played a role in the loss.
- Be sure you are healthy! All women considering a pregnancy are encouraged to begin taking folic acid and eating a healthy, balanced diet. If you are overweight, it is advisable to achieve a good weight before your pregnancy – your provider can provide you advice on the best approach for you. Smoking, alcohol, or drug use should be stopped and programs may be available to assist with this process – again, just ask your provider. Give your baby every opportunity to thrive before he/she is born!
- Once pregnant, this pregnancy should be considered ‘high-risk’ based on the previous loss. A visit with the OB early allows for more detailed discussions about the plan, confirmation of the pregnancy, and ultrasound for dating the pregnancy. If the mother’s history indicated, additional tests may be done at this time. Also during the first trimester, the PAPP-A blood test can provide information about risks of chromosomal or anatomical concerns, and it is also an indicator of placental function – a benefit that is not always discussed but vitally important.
- During the second trimester, the usual ultrasound at 18-20 weeks will be done to assess the baby’s anatomy. I encourage providers to also assess the baby’s growth, placental characteristics, cord insertion, and blood flow through the umbilical cord. Ask your doctor about growth charting based on ultrasound measurements rather than the tape measure approach so that a change in growth for your baby can be easily identified.
- The Quad screen provides more information about placental function and risks of concerns about the baby’s health. Diabetes screening and follow-up testing will be completed as is routine for all pregnancies.
- In the third trimester, all pregnant women should be aware of their baby’s movements, personality, and tendencies. Any changes to this baby’s norm should be reported and investigated immediately. Each baby is different – so don’t try to compare this baby with your previous ones or your friends. You can learn more about this process in our See Me, Feel Me materials.
- Monitoring for signs of infection or Group B Strep status will be conducted as usual. Providers are encouraged to begin weekly ultrasounds to monitor and track the baby’s growth, the amniotic fluid index, and placenta and cord characteristics. These often begin at 28 weeks gestation. Some providers will include in this evaluation a biophysical profile (ultrasound with specific criteria regarding baby’s behaviors) and non-stress testing with kick counting. Other providers will wait until 32 weeks to begin these additional tests. Again, discuss these plans with your provider early on.
- Any concerns or declines in the health of the mother, baby, or pregnancy should prompt a discussion between the family and the health providers about options and pros/cons or risks/benefits of any decisions. This conversation may mean early delivery of the baby if the intrauterine risks of continuing the pregnancy are too great. This is especially true at later gestations and as the pregnancy approaches full term. If all goes well and as expected, early delivery (by induction or c-section as appropriate) should be scheduled by 39 weeks, or earlier if desired by the family and the baby’s lung maturity has been confirmed by amnioscentesis.
This is a VERY general guide, but can be a place to start the discussion with your healthcare provider. Some OBs will also include a perinatologist or maternal-fetal medicine specialist in your care. There are MANY variations to protocol, but the most important thing is that you and your provider are in agreement about how things are going, what should be done, and the coming plan.
As the pregnancy progresses or issues arise, continue to have open discussions to make adjustments as needed. If you ever feel uncomfortable or have persistent worries, DO NOT hesitate to immediately mention this to your provider and insist your concerns be thoroughly investigated. There is no question or concern that you have that should be dismissed or avoided by you or your healthcare team.
Dr. Uma Reddy from the Eunice Kennedy Shriver National Institute of Child Health and Development (NICHD) has done a significant amount of work in this area. She will be one of the speakers at the Stillbirth Summit in June 2014 – you won’t want to miss the chance to hear this nationally-recognized stillbirth researcher!
In addition, Dr. Tracey Mills from the University of Manchester is involved with a clinic in the UK dedicated to caring for families during a rainbow pregnancy! She will also be at the Stillbirth Summit and will be sharing her protocols, experiences, recommendations, and more! This will be a must see presentation for all providers who care for women during a subsequent pregnancy and all families anticipating or hoping for a rainbow baby.
Dr. Ruth Fretts has written several opinion pieces for the American Congress of Obstetricians and Gynecologists (ACOG). She will be talking about the Stillbirth Scandal that often comes into play with subsequent pregnancies as well.
Some of my favorite medical articles about caring for subsequent pregnancies are below. Feel free to share them with your provider and use them as a place to start your rainbow conversation.
For more information or to have See Me Feel Me materials mailed to you, email me at email@example.com.
Some of the most common questions we receive at Star Legacy Foundation deal with prenatal care during a pregnancy after a loss. Thousands of families every year enter into pregnancies knowing first hand that too many pregnancies don’t have a happy ending. Their past experiences shattered their sense of innocence and they face months of emotions swinging between paralyzing fear and vulnerability, to overwhelming excitement, love, and appreciation.
Many people may wonder why a family would choose to endure such a process. I can’t speak for anyone else, but for me, it was because I always wanted to be a parent. When Garrett was stillborn, it only heightened my desire to raise a child. It doesn’t have to make sense or be logical because everyone will have their own reasons or desires.
As for managing a subsequent pregnancy, there are many different schools of thought. The bottom line is that it needs to be what the parents/family and the health providers have discussed and are all comfortable with. If you are not comfortable with the plan recommended by your OB/midwife, it may be worth talking to some other providers to get other opinions or find someone whose philosophy better matches your needs.
Below are some of the suggestions I have personally given to families. It is a collection of what I learned in my 3 subsequent pregnancies, from other women during their rainbow pregnancies, from the medical research and literature, and from what ‘feels right’ to me. This is in no way medical advice that is appropriate for everyone or every situation – but it is intended to give you an idea of some of the things to consider and discuss with your health professional.
Timing of a subsequent pregnancy is based on what you need. It can be complicated by grief, medical conditions, postpartum depression, other children/extended family, spiritual beliefs, finances, practical concerns, etc. First, talk to your doctor about any recommendations they may have. If they want you to wait a certain amount of time – ask why. Some women will benefit from more time to do additional testing about the cause of their loss or to treat/manage any health conditions or risk factors that are present. Sometimes a recommended time frame is an arbitrary number based on how long the provider thinks is an “appropriate” amount of time for a woman to heal emotionally. Emotional readiness does not have a time table and cannot be predicted by anyone – including the parents! This is something that each couple must identify for themselves.
Emotional readiness depends on the personalities, experiences, and needs of the family. Some families do very well when they quickly have something to remind them of the joy, hope, and excitement in life. Some families do well if they can process their grief in their way and to the extent they need without the additional emotions or concerns regarding another baby. Either is fine – it depends on what feels best to the family.
“Replacement syndrome” is often brought up in those who desire to have another child soon. The thought is that the parents are trying to “replace” the child who died with a new child. While this may be an issue for certain people, I have not encountered this to be a significant problem. The majority of the parents I work with (myself included) feel that a parent’s heart is large enough for ALL of our children and that none of them could ever replace another.
Throughout the pregnancy, attention needs to be given to the emotional health of the entire family. Often, our reactions to these emotions are not what we could anticipate or expect. Give yourself permission to be who you are. But seek out help when it’s needed. This may be professional counseling or group therapy, but it can also be support groups online or in informal/social circles. It can be talking to another loss parent/rainbow parent. It could be letting your partner or friends/family know what you are feeling and needing. It can also be therapies such as art, music, yoga, writing, etc. Don’t hesitate to mention your emotions to your OB at each of your prenatal visits. Your psychosocial well-being is an important part of this care – particularly so in a pregnancy after a loss.
There are a number of books available that talk about the conflicting emotions of a subsequent pregnancy. I found them to be extremely helpful simply because it helped me realize that I wasn’t the only person who thought these things or that I wasn’t going crazy. I was just a grieving mom and an expectant mom – and that is a very complex person to be!
If you are interested in learning more about emotional care in pregnancies after a loss, please consider attending the Stillbirth Summit this June! For example, Dr. Deborah Simmons will be talking about treating grief including PTSD and other complex aspects of pregnancy/infant loss, Jessica Killeen will present information on the value of online support groups, Dr. Joanne O’Leary will talk about bonding with baby in subsequent pregnancies, Dr. Jennifer Huberty will discuss using activity to cope with grief and prepare for rainbow pregnancies, Dr. Marian Sokol will address sibling grief, and much more!! Visit here to see more details, the full agenda, and to register before June 1 to get early-bird prices.
The medical management of a subsequent pregnancy is another huge issue that I’ll address next time! Until then, comment below to tell us what was helpful to you in your rainbow pregnancy!
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?