Jessica Spradlin watched her child die. At 15 weeks pregnant, she thought she might be having a miscarriage. She rushed to the emergency room, bleeding, and continued to do so for 2 more weeks while her son Kailor was still growing and developing normally. Kailor was unaffected by her bleeding, and she was scheduled to come back at 20 weeks to see the Maternal Fetal Medicine (MFM) specialist.
But at a routine ultrasound at 18 weeks, she got the diagnosis — subchorionic hematoma (SCH). This diagnosis is not uncommon. Generally SCHs go away by 20 weeks. However, Jessica’s SCH continued to grow instead of disappearing, putting her at greater risk for a miscarriage or preterm labor. She was told she should consider terminating her pregnancy, but Jessica was not going to give up on her baby boy. She made it to 20 weeks, but needed a blood transfusion by then. The doctor told her at 23 weeks, he would give her steroid shots to prepare Kailor for a preterm birth.
Jessica recounts the next 2-3 weeks of her life as being the most frightening. She made it to 22 weeks, 4 days when she passed out at the hospital (not the same hospital her MFM specialist was at, which was 40 minutes away). She was given her 10th blood transfusion as well as magnesium. Her MFM doctor let her know they were ready for Kailor at the NICU, 40 minutes away, and to go ahead and transfer.
But the hospital Jessica was currently at being stabilized failed to transfer her. They waited nine hours before arranging transport for her, during which time Kailor was born. He was completely in his amniotic sac and it took seven minutes for the doctor to rupture it. This delay could have caused Kailor extra respiratory stress, since the placenta only provides oxygen for a few minutes upon detaching from the uterine wall (Jessica had a complete placental abruption, so the placenta came out with Kailor). Upon rupturing the sac, the doctor ordered a do not resuscitate (DNR) immediately, against Kailor’s family’s wishes.
But Kailor was still breathing and his heart was beating! He was 1lb 2oz and 12 inches long. Jessica said he looked just like his daddy and brother. But because he was born 3 days too early, the hospital did nothing. They gave Kailor, still alive, no medical treatment. Kailor lived on his own with no intervention for 51 minutes, when he died in Jessica’s arms.
A photo of Kailor is below. Jessica told me,
“I think people believe more of what they see, and seeing Kailor and knowing he could have lived and wasn’t given the opportunity speaks volumes.”
Jessica’s story is not uncommon — this happens all across the United States, every single day. Why are 22 weekers denied life-saving medical care?
Well, the stats for survival of 22 weekers are abysmal, with the average reported rate being about 10%, which starts a vicious cycle. Doctors refuse to give pre- or post-birth care to a 22 weeker or the mother because the stats indicate there is no use. Hospitals do not update their policies for extremely preterm birth care because based on widely available stats there is no benefit in providing intervention, and doctors and nurses may be reluctant to take action beyond policies without evidence the action may actually help. But the stats are bad in the first place because they include studies where 22 weekers got no medical intervention before or after birth — which would dramatically increase the chance of survival for such preemies and encourage more hospitals and individual medical providers to give care. Dr. Edward Bell at the University of Iowa (UI) Children’s Hospital sums up this cycle:
“there is a real problem if doctors are talking to parents about their baby’s chances using outcome data that include babies for whom no active treatment was offered... What parents want to know is, ‘If our baby is treated, what are her chances?’”
Additionally, the cutoff most hospitals have for medical intervention for preemies is 24 weeks. But this age is based on the Mother's time since last menstrual period (LMP), which could be up to a week off in calculating the age of the baby. This means some babies considered 24 weeks old and getting medical intervention and being saved may only be 23 weeks old, and a 23 weeker denied care may actually be closer to 24 weeks old. Hospitals could be saving 22 and 23 weekers without even knowing it, and some 24 week old babies may be dying because they are denied a standard of care that would drastically increase their chance of survival.
Kayla Ibarra was caught in this cycle and her twin girls were almost completely denied medical care. Her water broke when she was 21 weeks along, as she was at a hospital getting an ultrasound. The doctor who was there to attend to her told her that her girls would be born that day, and they would die, since Kayla was going into labor. The doctor refused to call another hospital to see if they would take Kayla at 21 weeks. A new doctor, a high-risk pregnancy specialist, came to her hospital room the next morning to tell Kayla it was pointless to call other hospitals to try to intervene to save her girls, because no one would take her until at least 23 weeks. Kayla laid in the hospital bed for 4 days, going into labor off and on. The hospital refused to give her any medication or treatment to delay birth or increase the girls’ chance of survival — which she was told was 0% — because the girls were not viable and medication would be wasted on her. On the fourth day, she went into labor for the last time, and a new doctor came to her room to let her know another hospital would take her and provide treatment. However, even when she got there, the NICU doctor was not encouraging:
“She told me all the things that can go wrong with the twins and how even after everything they’ll most like[ly] still not make it and if they DO make it, they’ll probably come with a bunch of medical delays and need consistent long term care. I was told their brains and lungs wouldn't develop properly. I was told 22 weekers, especially twins just don’t and can’t make it.”
There is a growing body of evidence showing babies born extremely prematurely, at 23, 22, or even 21 weeks have a chance of survival, if action is taken. Some hospitals routinely take action to save these babies and as a result, have much higher survival rates of extremely preterm infants. Pre-birth actions can include steroid shots to hasten the lung development of the baby and reduce their chances of brain bleeds, magnesium sulfate to provide neurological protection to the baby and reduce risk of cerebral palsy, and prophylactic antibiotics in the case of PPROM for the mom to try to delay delivery. Increasing the chances for the preterm babies to survive starts with action done before they are born, not just when they are delivered. A mother given these treatments before delivery could deliver a baby having a chance of survival who would not have had a chance before. After birth, the use of intubation, surfactants, a combination of breathing therapies, and other medical treatment may be possible to help the baby stay alive and breathing in a NICU until their lungs are developed enough to go home.
But even with evidence showing survival becoming more probable, doctors and nurses may still be reluctant to help. Women often get told their child will suffer if kept alive, or that they will be severely mentally and physically disabled. Moms are told their child will have a “poor quality of life” or “moderate to severe neurodevelopmental impairment (NDI).” This sounds scary and intimidating to mothers. Becca, a NICU nurse, explains more:
“a lot of docs don’t want to resuscitate because they know the babies might live but they feel their quality of life isn’t worth it. They often talk about moderate to severe neurodevelopmental impairment stats. Which sounds awful, right? And the numbers can be like 50% of these babies will have mod-severe neurodevelopmental impairment. That sounds really bad. But when you look at what is actually considered mod-severe NDI- it infuriates me. A child who has trouble on uneven surfaces falls into this category. Or a kid who holds onto the railing to go up stairs.”
I want to be careful here and not villainize doctors or NICU nurses — 22 weekers are saved through the amazing care and intervention given by doctors and nurses! However, we cannot deny the reality of what many women face when being told the likely outcomes of their premature delivery. This kind of outlook and attitude by doctors may be fueled by true ignorance. Yet even with knowledge of improved survival rates with active care, some doctors still seem reluctant, saying about the data, “The reported outcomes will be interpreted as good or bad through the eye of the beholder…” Other doctors, such as Keith Barrington, neonatologist and clinical researcher at Sainte Justine University Health Center in Montréal, combat this attitude:
“I don’t know what kind of beholder would see the survival of babies as a bad thing, even if the survival means that some of them might have cerebral palsy or developmental delay...This is a group of babies, previously left to die and thus with a 100% mortality rate, who, the group in Iowa has shown us, can be rescued by high quality perinatal and neonatal care…”
Medical intervention for extremely premature infants makes a huge difference in their survival rates. Sweden currently holds the world record at the best survival rate for preemies born at 22-26 weeks, 77%. This is up 7% from 10 years ago. In those 10 years, Sweden standardized care for preemies in that age range. Dr. Edward Bell, a neonatologist currently at the University of Iowa (UI) Children’s Hospital, stated,
“I've been in this business for 40 years, and I've seen the threshold of viability move back about one week every 10 years or so in my practice.”
The British Association of Perinatal Medicine (BAPM) has even recently amended its guidelines to include guidelines of standard care for 22 weekers. But in the US, only 1 in 4 hospitals included in a study offered care to 22 weekers, and only 1 in 3 offered care to 23 weekers.
At some hospitals in the US, though, the survival rates for extremely premature infants is significantly higher than the national average:
“Survival rates at the NICU at UI Children’s Hospital for babies born at 23, 24, and 25 weeks are significantly higher than those at other U.S. hospitals: 71 percent at 23 weeks, 86 percent at 24 weeks and 90 percent at 25 weeks,” says Dr. Edward Bell.
Over at the University of South Alabama (USA) Children’s and Women’s Hospital, Renee Rogers, the hospital’s NICU manager, told the Washington Post the survival rates at the hospital for 21 and 22 weekers is about 68%. She further expounded on the hospital’s legacy:
“We’ve helped really small babies, born at 21 or 22 weeks, for more than two decades.”
Doctors at USA Children’s and Women’s hospital published data they collected on survival rates of extremely premature infants at their hospital in the Archives of Pediatrics and Adolescent Medicine:
“The striking disparity with our survival rate among the very immature ELBWIs [extremely low-birth-weight infants] suggests either differences in management and outcome among neonatal centers or a trend toward continued improvement in survival beyond the 1990s.”
Jade Ewoldt experienced first-hand the other end of the spectrum that Jessica did, giving birth at a hospital which routinely saves 22 weekers and has been doing so for over decades. At seven weeks along, she found out she was having twins, and also found out they were mo/di (separate amniotic sacs, but a shared placenta) and were at risk for Twin to Twin Transfusion Syndrome (TTTS). At 22 weeks, her water broke and the Cincinnati Fetal Center at Cincinnati Children’s Hospital told her that her twin girls had 0% chance of survival and would likely be born stillborn, though she could still feel them moving inside her. However, Jade did not give birth at Cincinnati, but at UI Children’s Hospital, so as soon as the girls were born and admitted to the NICU, their survival rate increased dramatically. Now, Keeley and Kambry are home with their family.
As far as negative developmental outcomes for extremely premature infants, research from the University of Iowa shows, “no or mild neurodevelopmental impairment” for extremely preterm infants who were “actively managed” was as high as 64% for 22 and 23 weekers and 76% for 24 and 25 weekers. The USA Children’s Hospital also reports a decreasing percent of severe NDI in very premature infants. Data from hospitals which give active care and intervention for 22 weekers are showing that the level of care received before and after birth significantly affects developmental outcomes in surviving infants, with the chances for severe NDI decreasing significantly.
The statistics for survival and developmental outcomes in 22 weekers is encouraging. Active care does improve survival rates and lower the chances of severe NDI. The University of Iowa and the University of South Alabama’s hospitals are not getting drastically improved results for 22 weekers because they are taking heroic measures to save preemies’ lives; they are taking steps every Level 3 and Level 4 NICU in America could take — and showing that these measures work.
Amy Hyde had no idea the care she received from USA Children’s and Women’s Hospital when her water broke at 22 weeks was not the same level of care any woman facing extremely premature birth received — her level of care was much higher.
She was diagnosed with PPROM. When her water broke while she was on a beach trip, she was rushed to USA Children’s and Women’s Hospital and given steroids, magnesium sulfate, and prophylactic antibiotics. As she was on bed rest and joining PPROM support groups, she learned,
“most hospitals in the US will not even admit before 24 weeks. Most will not offer steroids or magnesium sulfate. Some women even have to fight to receive oral antibiotics. In some other countries, I've discovered that they don't even consider a baby viable until 28 weeks.”
Because of the care she received, she was able to make it to 26 weeks before she went into spontaneous labor and gave birth to her son, Trenton, who weighed 2lbs 2 oz. He is now almost 2, and is doing wonderful. Below are some photos of Trenton Amy shared with us:
Each of these women — Jade, Amy, Kayla, and Jessica — were willing to share their stories with Human Defense Initiative and I to help raise awareness for 22 weekers. These babies do have a fighting chance if proper medical care and intervention is done. Kayla, Amy, and Jessica work together, volunteering their time to advocate for mothers and their very premature babies. They started the advocacy group called TwentyTwo Matters, which you can find on Instagram and Twitter. Follow the stories of these precious lives being fought for, or reach out to them if you are a mother and are facing extremely premature birth. They have even put together a map of all hospitals that they know of who have successfully treated a 21 or 21 weeker, including the date of the birth and the age of the baby! If you gave birth to a 21 or 21 weeker and a hospital gave you and your baby medical care, you can fill out their survey here so they can add that hospital to the map. The team is so busy they recently added two new advocates, Robin Schneider and Amy Butler, to handle the influx of daily contacts from parents.
“Through my advocacy work, I know how easily my story could have been different. I work with women weekly who are told all the way up to as late as 23 weeks that termination is their only option after PPROM. I am aware that my son beat the odds by not being born at 22 weeks. It has become my life's mission to educate and advocate for parents experiencing extremely early preterm labor, and for babies born before the arbitrary 24 week cutoff imposed by many hospitals. Through our advocacy group, TwentyTwoMatters, we have been able to help dozens of parents and babies. We will not stop until well informed parents everywhere are being allowed to decide what type of medical interventions they want for their baby and women are being given all of their options, not just worst case scenarios.”
Jessica states in her experience,
“No child should be buried because of lack of medical care, no baby grave should be visited because doctors decided not to try, no family should feel pain so deeply everyday when their baby could have been saved. I fight for babies like Kailor, your child is just as important as mine. I fight for 22 weekers, they ARE viable; I fight for your family to never know this pain.”
Kayla told me,
“The most important thing is for mothers to know that these things are lies. There is hope. There are living, surviving 22 weekers and they matter. Their children matter. We want the world to know we are here to help.”ut
Your baby’s life matters. Babies born at 22 weeks can survive and thrive, and these moms are making that fact more well-known. Raising awareness of these babies’ survival rates when medical intervention is given can help break the cycle and save more of these tiny warriors.
Photos used with the permission of the mothers.
The views and opinions expressed in this article are those of the author and do not necessarily reflect the official position of Human Defense Initiative.