Obstetric safety requires the dual consideration of both the mother and the child, therefore, the principles of obstetric and neonatal safety must be integrated cohesively.
Our APSS outline actionable steps healthcare organizations should take to successfully implement and sustain behavior change for high reliability, shared understanding, thorough communication, and meaningful person-centered care across the organization.
Actionable steps include:
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Learn MoreOn November 23, 2019, I was diagnosed with HELLP Syndrome at 34 weeks 5 days. I was being followed by a High Risk OB group about an hour and a half from my home due to a different diagnosis of psoriatic arthritis. My husband and I had gone to the High Risk doctor for the previous 2 trimesters and loved the doctor and the group and especially loved getting 4D images of our son. My original appointment had been 2 weeks earlier, but we moved it due to a friend’s wedding.
When we arrived, my blood pressure was 164/98. The nurse asked if it was always that elevated, and I brushed it off due to terrible traffic on the way. She asked for me to pee in a cup and I thought that was a bit unusual, but obliged.
When we went into the exam room, the sonographer seemed flustered and we were not able to get any good images of our son. Within minutes, the doctor came rushing in and sat down and told us rather abruptly that we would be having our baby that day or the following day. I was so confused. I felt fine… I actually felt great! I had just had my baby shower and maternity photos taken the weekend before after all!
The doctor proceeded to ask us where we were planning on delivering and then recommended we deliver at a facility with a NICU. My head was swimming. This can’t be right! I’m always healthy, worked out during my pregnancy, ate well, and felt good. As a nurse walked us over to the obstetric emergency department, I began to cry. I could not believe something was wrong. Lab work was collected in the emergency department and I was admitted under observation for 24 hours due to elevated liver enzymes and low platelets. I continued to think my providers were making a mountain over a mole hill and that I would be discharged the following day.
The following morning, the obstetrician came to my hospital room and told me that my liver enzymes had doubled over night and that my platelets had dropped even more. He officially diagnosed me with HELLP syndrome. He was concerned enough that he
said the only cure would be to deliver my son via C-section that day. As he left the room, the nurse gave me a steroid injection to help my tiny son’s lungs produce surfactant in preparation for his entrance into the world.
I was emergently taken down to the operating room where the obstetrician unsuccessfully attempted to flip my son so he was not breech. After three attempts, I was wheeled into the operating room. With my amazing care team, and my husband by my side, our son was delivered on 11/23/2019 at 4:17PM weighing 5 pounds 7 ounces.
I was scared. I was crying. I was mad. But now, I am thankful. Since that time, I hav been able to do research on HELLP syndrome and learned that it is a rare and life-threatening pregnancy complication with a mortality rate as high as 30%. I was one of only 48,000 women per year to develop this condition. Looking back at the progression, the only symptom I had the night before was nausea and indigestion after eating dinner. The rest of my symptoms were masked and only discovered by taking a blood pressure reading and doing lab work. Had I kept my original appointment, I am not sure I would be here today.
Because of the swift action and identification of my illness, I am alive today to tell our story.
We had a complicated delivery with our first son, Oliver. It started as a home birth and resulted in an emergency C-section in hospital. One year later, when we got pregnant with our second son, Benjamin, we were surprised that, despite our traumatic birth history, the recommended plan was VBAC (Vaginal Birth After Cesarean). The UK maternity approach follows a midwifery model for low risk women and, since we had a healthy pregnancy, we were not scheduled to see a doctor throughout our prenatal care. At 41 ½ weeks, with no signs of labour, we saw an obstetric consultant for the first time. We were told that a natural spontaneous labour with VBAC was still the safest route and we were encouraged to continue daily monitoring with our local midwives and return the following week for ultrasound. Our next appointment was booked for 42 weeks plus 1 day. We never made it.
At 42 weeks, we went for a third membrane sweep with our midwife hoping to stimulate labour. She monitored Benjamin’s heart rate and, after a noticeable deceleration, we were rushed to the hospital in an ambulance. His heart rate appeared to normalize, but since we were 2 weeks overdue, we needed to discuss intervention options. We decided to proceed with a cesarean which was scheduled for later that day. We were taken off monitoring and allowed to walk around the grounds. When we returned for our pre-op later that evening, we were told that an emergency C-section had come in, and our procedure had been rescheduled for the next day. Despite our protest, we were assured there were no risks to mother or baby and were advised to return home to get some rest. We were booked in for an “elective” cesarean the following morning. We never made it to that appointment either.
We arrived home at midnight. At 5 o’clock in the morning, something was wrong. Benjamin had stopped moving. We rushed back to the hospital. There was only a faint trace of a heartbeat and we immediately underwent an emergency C-section. Benjamin was born at 6:30am, having suffered Hypoxic Ischemic Encephalopathy (HIE), an injury that occurs when the brain doesn’t receive enough oxygen and blood. Benjamin was sent to the NICU where he was selected by lottery to participate in a highly-specialized trial of Xenon Gas and Cooling Therapy for babies with HIE.
Benjamin’s first MRI showed that the damage to his brain was relatively minor and localized. This meant that he might only have mild learning disabilities or physical impairments. Since the gas and cooling treatment was believed to prevent further brain damage, we eagerly awaited signs of improvement. Instead, Benjamin started having seizures. This was very concerning. We spent the next 24 hours by his side singing to him, reading stories, playing music, and caressing him. He never had another seizure, but the effects of the oxygen deprivation had taken its toll.
The second MRI revealed a devastating reality. Benjamin’s brain damage was extensive. We were told that he would be dependent on machines and would have no quality of life. On Day 5, with the generous guidance of the NICU team, we proceeded with “compassionate extubation,” allowing us the space and time to share our last moments with him. We washed him, dressed him, took him to the rooftop of the hospital and smudged him with Native American medicines. We laid him down between us in the designated holding space and fell asleep with him by our side. Benjamin gave us 8 hours to deepen our connection with him and fill our hearts with love. He died at 1 o’clock in the morning, just 5 days after his birth.
The following week, the Coroner ordered an inquest to investigate the decisions preceding Benjamin’s birth. For six months we examined the life-changing course of our maternity care and tried to reconcile that errors may have been made. We hoped the inquest would be an opportunity for the hospital to learn from their mistakes. In listening to medical staff give evidence before the Coroner, it became clear that transparency was lacking. The alarming discovery was the admission by a midwife who claimed she made a phone call to the Chief of Staff expressing concern about sending us home. There was no record of this call in written witness statements. The inquest was halted and an internal investigation was launched. It was confirmed that hospital staff tampered with evidence, but they were unable to provide an unequivocal account of what happened and why. No disciplinary action was taken and the inquest resumed. The most challenging part of the court proceedings was hearing testimonies that twisted the truth and characterized us as parents who rejected induction determined to have a natural birth. As the inquest came to a close, we hoped that the truth would prevail.
The Coroner ruled in our favour. We should not have been allowed to go that long post-term. We should not have been sent home that night. And we should not have been categorized as a low risk pregnancy. She made strong recommendations to help uphold the current guidelines of maternity care, which the hospital has now implemented. New measures have been introduced to ensure a more thorough consideration of VBAC pregnancies; post-term risks; and heart rate monitoring. Additionally, special attention has been given towards improved methods of documenting appointments, conversations and date deadlines.
We trust that valuable lessons have been learned and lives have been saved as a result. We believe that Benjamin’s death has changed the way things are done. And yet, we still have many unanswered questions and unresolved issues about the way in which our case was handled. We are left with an overwhelming desire for more transparency and accountability by medical professionals, despite the fear-based culture of litigation. We know that when mistakes remain unacknowledged, it is a missed opportunity to honour the patient and, more importantly, prevent those mistakes from happening again. We will continue to share our story in an effort to promote a wider conversation about patient safety. This is how we parent Benjamin. This is how we honour his legacy.
Due to lack of knowledge, communication, and negligence, my daughter was taken from me in an emergency June 3rd, 2018. Miscommunication between transfer hospital and new hospital caused the life if my beautiful 7oz baby girl. I was transferred to this hospital for observation for placenta previa. My bleeding was under control, until the resident doctor gave me pitocin and cytotec causing my cervix to dilate, placenta to explode, and the birth of my baby, who died during the process. There is much hope in my fight for truth. The state is investigating, and I have a great support system from my family. Misjudgment and negligence also led to end another woman’s pregnancy the same night as mine by the same facility. I found this woman by chance—although unfortunate, our combined events help build a stronger case against the hospital. Every day is a fight to the truth and every day I get closer to it. The closer I get to the truth, the more I will be willing to share as well. Due to being in the middle of the case, I am hesitant to share too much. I hope this helps. Thanks, Erin
In 2014 Kristen Terlizzi and her unborn son found themselves caught in a catastrophic dilemma facing maternal care. The c-section that birthed her first child two years prior caused Kristen to develop a life threatening condition in her second pregnancy called placenta accreta. Placenta accreta is a rarely discussed future risk of a cesarean where the placenta grows out of control like a cancer. It puts the mother at high risk of a massive hemorrhage when the placenta is removed. Placenta accreta is fatal for as many as 1 in 14 women.
As with most women, Kristen had never heard of placenta accreta until she was diagnosed with the complication at a routine ultrasound. More extensive imaging would go on to show that she had developed the most severe form of the condition called placenta percreta. Her placenta had grown completely through the uterus wall and had invaded her pelvic organs, including her bladder.
Shortly after diagnosis, Kristen switched care to a tertiary trauma center and was admitted into the hospital where an interdisciplinary care team was pulled together to plan her delivery. The decision was made to deliver her son over 6 weeks early. Although premature, Leo did great at birth while Kristen’s case was more severe than expected. Weeks after delivery retained placenta caused her to develop a deadly blood clotting disorder called Disseminated Intravascular Coagulation (DIC). Kristen required emergency surgery to remove the placental tissue, repair her bladder, re-implant her ureter and remove her uterus, cervix and appendix. She hemorrhaged during surgery and required transfusion of 26 units of blood products.
Kristen and Leo were lucky to survive placenta accreta, and the amount of resources and expertise it took to save their lives was staggering. Kristen spent two months postpartum in the hospital including two stays in ICU and her son spent his first month of life in the neonatal intensive care unit. Their care team included obstetricians, maternal fetal medicine specialists, gynecological oncologists, anesthesiologists, neonatologists, interventional radiologists, hematologists and infectious disease experts.
Back in 1970 cesareans accounted for 6% of United States births and placenta accreta was astonishingly rare. Today a cesarean is the most common surgery performed in the United States and accounts for 1 in 3 births. Placenta accreta rates have risen in parallel with cesarean rates and the condition currently affects around 1 in 333 pregnancies. Increasing cesareans and placenta accreta are both contributors to the sharp increase seen in United States maternal mortality and morbidity rates over the past 25 years.
After recovering from her experience, Kristen began sharing her story in order to bring attention to patient safety in maternal health and the downstream costs of cesarean deliveries. Kristen co-founded the National Accreta Foundation, www.preventaccreta.org, which seeks to eliminate preventable maternal mortality and severe maternal morbidity attributable to placenta accreta. Kristen speaks at events for medical students, hospital leadership, perinatal quality collaboratives, medical conferences and blood banks. Her medical case report is published in the official journal of the American Congress of Obstetricians and Gynecologists (ACOG) and her patient story has been featured in Vox Media, the Wall Street Journal, NPR & ProPublica’s Lost Mothers project, and People.com.
It was a normal, uneventful, joyful pregnancy, albeit filled with a little anxiety since our first pregnancy ended in a “missed miscarriage” just three shorts months into our marriage. I was thrilled to be pregnant again after losing our first child at 9 weeks’ gestation and my anxiety led me to be very diligent in watching over my health to keep the baby as safe as possible. After doing thorough online research, I did everything I could to ensure my and the baby’s health: I changed my diet to a completely organic one, drank recommended amounts of water daily, exercised daily and got plenty of natural sunlight, and after copious amounts of online research and reading reviews, I decided to get prenatal care from the midwifery services at a well-known teaching hospital near our home in Northern Virginia. I was adamant about having a natural birth and chose the midwifery services for this reason. It was reassuring to know they were “experts in the birthing process” yet were still supervised by doctors and practiced in a hospital environment.
I went into labor a day before my due date. Everything progressed as normal. We followed the midwives’ suggestions to a ‘T” and checked into the hospital once the contractions got stronger. The day we checked into the hospital just so happened to be my due date. I was brought to a labor room and was immediately monitored and checked by a midwife. I was already at 8 cm and was told that the baby should arrive in a few hours. Although in an extreme amount of pain because I was already in active labor, I was so excited to meet our little girl. This was at 9am. I chose not to have an epidural because I wanted a natural birth with no interventions, a philosophy to which the midwives prescribe. At noon, when I was at 10 cm and completely effaced, I was told to push.
This is when it all went horribly wrong. At the time I was told to push, Gianna’s head was not yet engaged. The head needs to engage in the pelvic inlet, which allows the rest of the body to engage in delivery. Her head was in a transverse position and never rotated to a face down or face up position, which is essential for a natural delivery. This scenario of pushing a baby in a transverse position should not have lasted more than 90 minutes. An unengaged fetal head is a sign that vaginal delivery might be difficult and after 90 minutes without signs of progression, vaginal delivery will definitely not happen. And if there is no progression in the baby’s position, a C-section is protocol. This is basic knowledge learned in the second year of medical school. A baby cannot withstand hours of contractions because their oxygen is restricted during that time and they do not have enough reserve to withstand the pushing. But the pushing continued for six more hours. I was told it was normal for a first-time birth to take this long. I was told that everything was okay. I was told to just keep pushing. There are time limits of every stage of delivery and 6 hours of pushing with no progression is unheard of and completely negligent. As I was told by a member on our investigative team, “It was like you were in a jungle having a baby with no person of medical expertise around.” I finally asked for an epidural because I thought I was going to die, literally. The pain from pushing that long with no painkillers was indescribable. Even when I asked for an epidural, I was questioned by the midwives who seemed to think that it wasn’t necessary. Despite their resistance, I insisted. Once I had the epidural, they noticed the baby’s heart rate decreasing and called a doctor in to assess the situation. It was now around 6pm. The doctor found meconium and a C-section was discussed. I was eager to have the C-section so it would all be over and we would have our child in our arms.
Our baby was delivered via C-section at 6:57pm with no spontaneous cry. She was rushed to the NICU and immediately intubated. She continued without spontaneous respiration and was limp and apneic. A physical exam at 7:15pm revealed a comatose baby and EEG results showed no brain activity.
I had no idea what happened. All I knew at that point was that our baby didn’t cry when delivered and was taken out of the operating room. I hadn’t seen her yet. Once I was in the recovery room, I was told by the NICU doctor, in a vague way, that she wasn’t doing very well and wasn’t breathing on her own.
The next four days were a blur. We had friends and family constantly visiting her and us in the hospital. We had strangers reach out via social media telling us they were praying for Gianna. Her situation never improved and was slowly deteriorating. We were overwhelmed and felt lost and devastated. What had happened? We had no idea. No one was giving us any answers. We were strictly updated on Gianna’s current status but were never given reasons as to how she got to that point, comatose, with no brain activity. During those four days in the hospital, we didn’t have enough energy to focus on what happened although it was constantly in the back of our minds. We had to focus our energy on what decisions we should make about Gianna’s present situation, which were overwhelming enough. After days of devastating lab reports and tests, Gianna showed not one sign or hope of recovery. After much prayer and thought, we decided to let her pass naturally in our arms. It was the saddest and most traumatic moment of my life.
I entered the hospital with a living, kicking, thriving baby in my womb. Four days later, we left empty-handed and heartbroken.
Holly Patterson died three weeks after her 18th birthday. Healthy and beautiful, this young native of the San Francisco bay area had her whole life in front of her.
Her story begins in 2003 when she entered a clinic with her boyfriend to terminate her seven-week-old pregnancy with the two-drug medical abortion regimen of mifepristone (commonly known as the Abortion Pill or RU-486) and misoprostol. (In 2000, the FDA approved a specific mifepristone medical abortion regimen for ending early pregnancy.)
At the clinic, Holly was prescribed an alternative or evidence-based medical abortion regimen that was not approved or evaluated by the FDA. Alternative regimens are routinely used by 99% of clinics. While there, she was given mifepristone, the first of the two-drug regimen, and instructed to self-administer misoprostol at home the next day. She was prescribed painkillers and told to return to the clinic on the seventh day to confirm termination.
Three days after her procedure, Holly called the clinic hotline to complain of severe abdominal cramping. She was told her symptoms were normal and to take the clinic prescribed painkiller. If her symptoms didn’t improve she was instructed to go to the emergency room.
On the fourth day, still experiencing severe cramping and bleeding, Holly went to the emergency room. The doctor there, whom she told about her abortion, sent her home after an injection of a narcotic pain medication.
The severity of the pain continued. Holly was weak, vomiting, and unable to walk. In the early morning hours of the seventh day, she was re-admitted to the same hospital. She died later that afternoon with her father — who had just learned of the pregnancy — at her side.
Months after her death, it was discovered by the CDC and the FDA that Holly had tested positive for Clostridium sordellii toxic shock syndrome following medical abortion. This was the first case of fatal Clostridium sordellii after medical abortion reported in the United States. Since 2001, there have been eleven FDA reported medical abortion deaths from sepsis. Nine of these were from Clostridium sordellii.
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My wife and I met in 2001 and five years later were married in a dream ceremony at the Palazzo Vecchio in Florence, Italy.
A year later, we were pregnant with our first child and on May 25, 2008 – a day after my wife’s birthday – our daughter entered the world, albeit six weeks early. My wife was diagnosed as gestational diabetic during the pregnancy and unfortunately, following the delivery, she remained diabetic. Thankfully, she was able to manage her condition through diet.
In early 2009, we were pregnant once again, but unfortunately, we lost the baby at 16 weeks. Needless to say, we were very devastated by the news. We made the decision to try one more time while time was somewhat on our side. I was 43; she was 42 – and diabetic.
We were blessed later that year with the news that we were once again pregnant. We were advised to get monthly progesterone shots to ensure that the uterine conditions were conducive to carrying the pregnancy to full term.
The pregnancy was difficult, with my wife losing her appetite and experiencing persistent diarrhea and extreme swelling in the joints, mainly the extremities such as her fingers and ankles/feet/toes especially in the second trimester. Additionally, she was unable to find comfort in sleep and spent many restless nights in the living room watching TV.
In January of 2010, during a routine visit to our GP with a cold, my wife passed out and was subsequently treated for dehydration in the ER. Her numbers checked out fine but this was to prove a warning shot over the proverbial bow of our ship. Later in June, my wife’s blood sugar levels became unmanageable by diet and she began taking twice daily insulin shots.
On June 28, during a visit to her OB/GYN, we were informed that her regular OB of five years had resigned from the practice and that her case would now be taken over by the principal partner in the practice. During his routine questioning, my wife disclosed a shortness of breath. She was 5’6″ and had already gained about 40-50 pounds with a due date of around August 8th. To his credit, our new OB was not happy with this info and immediately referred her to the ER.
Upon admission to the ER, she was diagnosed with critically low potassium levels (approx. 2.3) as well as abnormal magnesium levels. She was immediately admitted to the hospital and started on potassium drip therapy and intermittent magnesium drip therapy. To compound matters, her blood pressure had risen and her blood sugar levels began to elevate.
As we were entering the July 4th holiday period, we discovered that her endocrinologist was on vacation and that there was no backup at the hospital during his absence, and therefore her case would be handled by her GP and OB. Also, the new OB was now on vacation and passed her case on to his partner…essentially, her second new OB in the space of two days.
Over the course of the next three days, my wife received a total of 18 units of potassium and approximately four units of magnesium. Additionally, they played with her insulin levels, at one point increasing it four-fold over what her normal daily injections had been.
Unhappy with the “threat” of a PICC-line and four more days of hospital stay, we eventually requested to be moved to the high-risk women and children’s hospital in town. On July 1 at approximately 6 p.m., we were finally granted the transfer – against the wishes of her “new” OB.
Five hours later, as I was about to settle into bed with our daughter at home, I called my wife one last time to make sure she was okay and was informed that I should put sleep on hold as it appeared that she was going to be discharged. Whereas the previous hospital (not high-risk) had wanted her to achieve a potassium level of 4.0, the high-risk hospital was fine with a level between 3.5-4.5, which she had finally achieved. She was told to go home, given a prescription for potassium pills, told to do a 24-hour urine collection and asked to return to the hospital on July 3 to have her urine tested for protein and to have her potassium levels checked again.
Everything checked out on the 3rd but she was advised to schedule an appointment with the high-risk OB as soon as possible – but not STAT. Upon calling said doctor, we were told the earliest they could get her in was 11 days later.
On July 14, my wife visited the high-risk OB and was told that her blood pressure was 171/95. She was diagnosed as severe preeclampsic and immediately admitted to the hospital while being told that they might deliver the baby that evening though they would try to manage her blood pressure and give the baby more time to develop. He was 35 weeks and four days at that time. Her BP never improved below 154/90 and our baby boy was delivered successfully via C-section without complications on July 16. All along, we were told that the cure for preeclampsia was delivery.
48-hours later on July 18 (Sunday), my wife was cleared to go home. As she had had her pre-requisite bowel movement that morning and her vitals were deemed acceptable (BP now at ~140/85), she was discharged with the usual spiel on caring for the C-section wound site and taking care of the child. No mention was made about the threat of post-partum eclampsia. She was told to schedule an appointment with her OB for that Friday, with no additional follow-up scheduled in between.
We returned home to find our daughter had a cold. On Monday afternoon, my wife began to complain of shortness of breath – not being able to get a full breath. We passed it off as normal for someone who had just had a C-section, combined with milk-laden breasts. On Tuesday, I returned to work for a team exercise while my wife made a visit to the pediatrician with our daughter and her brother. She was again experiencing shortness of breath and was finding every step to be a struggle.
That evening we went to bed at around 11:15 p.m. About an hour later, I was awoken by her and was told that she “needed my help.” Quite groggy, I took a moment to get my bearings and then accompanied her into our kitchen. When I asked her what was wrong, she said she couldn’t breathe – and the situation quickly devolved into what appeared to be hyperventilation, accompanied by extreme anxiety and fear. I tried to calm her, but it just increased to the point that I called 9-1-1, having determined that it was beyond my scope of understanding.
I stayed on the phone with the dispatcher for seven painful minutes while my wife went from a seated-on-the-chair position to a seated-on-the-ground position to a laying-on-the-ground position. At the same moment that the paramedics arrived, my wife stopped breathing and began to turn blue. Though the paramedics tried in vain to get a pulse and start her breathing again, they ultimately left the house performing CPR on her, heading to the hospital only five minutes from our house.
Upon arriving at the hospital, I was told that they had managed to regain a pulse after 25 minutes but that my wife had most likely suffered severe brain damage from the lack of oxygen. Their prognosis for recovery was grim, with little hope given for any meaningful recovery. For all intents and purposes, my wife had died in my arms on our kitchen floor, her final words being “I love you.”
Joan stayed with us for 17 days. Her family – her mother, father, sisters, brother and numerous nieces, nephews, friends, and in-laws – were by her side constantly, providing a 24-hour vigil and soothing her as best they could with prayers, music, and conversation. She never regained consciousness and on August 6, three days after being removed from life support, she passed away. The silence since then has been deafening.
According to the coroner, her official cause of death was determined to be post-partum eclampsia, a disease that many doctors refuse to acknowledge as real. In fact, consultations with five medical experts after her death yielded five different points of view on how her collapse came about. Not a single one would corroborate the findings of the coroner.