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?
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.