INDIANAPOLIS (WTHR) — The cry is unmistakable and so are the shakes that follow. For some babies born addicted, seizures are next.
In Indiana, hundreds of innocent children face excruciating pain in the days and weeks after birth. It's a cycle that starts when addicts get pregnant. Doctors say often the mothers arrive at the hospital late in their pregnancy with complicated cases and nowhere to turn. Those on the frontlines see it daily and call it a scourge that's accelerating.
"Our facility, I'm sure other facilities, can't meet the demand," says Riley Maternal Fetal Specialist Dr. Tara Benjamin when talking about the number of babies born addicted and needed specialized care.
The Silent Victims
The cycle is repeated so often in Indiana, it's led to a growing health and legal crisis that's filling up hospital nurseries and clogging our courts. Providers say the number of newborns suffering has yet to peak.
"The victims we see are the babies. They are kind of the silent victims of this opioid epidemic and I don't feel like enough attention has been paid to them," says IU Riley Pediatrician Emily Scott.
Gone are the much-publicized crack babies of the 1980's and 90's. The children today are born addicted to heroin and other opioids like oxycodone, hydrocodone codeine, morphine and fentanyl.
Doctors and nurses say an onslaught of newborns diagnosed with Neonatal Abstinence Syndrome or NAS, is filling up Methodist Hospital's Neonatal Intensive Care Unit.
"At any one point in time 25 percent of our patient population are babies that are exposed," says Dr. Izlin Lien a Riley neonatologist with IU Health Methodist. That’s an average of 1 in 4 newborns exposed to drugs. The 2016 numbers aren’t finalized yet, but hospitals statewide report a similar trend.
Lien says at Methodist, a typical NICU bed alone is $5,000 a night and the NAS babies stay for a prolonged period of time.
"Some of them stay two to three weeks, some of them stay up to six weeks," Lien said.
Medical staffs are adjusting to meet the need.
"It's difficult. It's not necessarily something that we were taught in medical school because this problem is new to our nation," Benjamin said.
To care for these patients, IU Health created an outpatient-based opioid treatment program called OBOT.
"It's really sad that this has become my passion in life. I didn't decide that I wanted to take care of women with opioid use disorder but there is a need for it," Benjamin said.
Benjamin joined the program in August of 2015.
"Before I came to Indiana I lived in a few states and I had probably taken care of less than five patients that had been addicted. That's five total. At this moment I care for 96 patients." Benjamin said.
Volunteer 'cuddlers' help calm babies
There are so many babies, needing so much specialized care, volunteer cuddlers step in to help.
At Methodist the cuddlers are retired nurses. They come to rock, hold and calm the babies. It also provides a break {photo of cuddler here- called: 3 baby rocking} for their former co-workers. "It might take you half an hour to just get them down to the point where they would take a pacifier," said cuddler Kathy Smith. Smith says the list of babies, diagnosed with NAS and needing extra care continues to grow. "It's a long list," she explains.
Dr. Scott says her staff is challenged when pregnant addicts arrive at the hospital. "They see this baby hurting and they just want to put the blame on somebody and I think that it’s really important to us to acknowledge that we feel that way and try to move past it because the last thing that these moms need is to feel blame from one other person."
Amber, of Greenfield, remembers when she arrived at Methodist. She was pregnant, homeless and deep in addiction.
"I came to the hospital and I said, 'I have a problem. I need help. I have life inside me that I am causing harm too and I can't stop myself.'" Amber said.
Amber is 29. "I was a pretty bad heroin addict. I used high amounts of heroin...every day."
She was referred to Dr. Benjamin who started treating Amber and her unborn baby right away.
"It took about a month for us to be able wean her from methadone and put her on an appropriate dosage of Subutex and she did well," Benjamin said.
A key part of the OBOT program is the doctor's ability to prescribe Subutex, a regulated prescription drug. It feeds the addiction need without providing the high. Benjamin says it’s a pill without the party. Since a pregnant mother in withdrawal increases the risk of miscarriage, the standard of care recommended by the American College of Obstetrics and Gynecology is assistive care with Subutex.
Benjamin and her OBOT colleagues secured specialized Drug Enforcement Administration Waivers so they could write Subutex prescriptions for pregnant women and their unborn babies.
Since Amber took Subutex and other drugs during her pregnancy, her third child, daughter Laynie was diagnosed with NAS at birth. "There was muscle tension…stiffness in her arms and legs and sometimes she would have jitters or slight shaking." Amber said.
Laynie's development and progress are being carefully tracked.
"She had an evaluation with First Steps not too long ago and she is actually ahead of where she should be," Amber said. And yet the long term effects of Laynie's exposure are unknown. "In Indiana right now we are just collecting the data. We don't even have baseline data. When we do we are going to be able to measure more long term outcomes for our patients," said Dr. Scott.
"I do worry about what happens then they leave. They go all over the state. So obviously whenever we send these kiddos home, we just put a little wish over them that everything is going to turn out ok for them," adds Dr Scott.
Amber hopes to stay in Indianapolis and not return to Greenfield where she fears the environment is more conducive to a relapse. She learned in counseling to re-evaluate people and places and things that were part of her lifestyle with drugs. Amber marked 130 days of sobriety when Laynie turned 3 months old. The hope for a better outcome is what led 26-year old Connie to enroll in OBOT. She had devastating results with her first two pregnancies.
"This is actually my third pregnancy. The first two babies, I lost the first one at 20 weeks." Connie said. She lost the second at 23 weeks.
At OBOT the expectant mothers are given prenatal care and are required to attend counseling and undergo drug tests.
"It's scary"
"I was really nervous at first that I'm going to go into this doctor's office and tell people that I'm pregnant and I'm taking this medicine and I need help. It's scary." Connie said.
Connie says she started using drugs after her father died. "I was 19 and I think that is kind of what turned my life upside down...everything has been downhill since." She says she used meth, pain pills and heroin, spending up to $80 dollars a day. It was a stressful life full of questions. "Where am I going to eat today? Where am I going to take a shower today? Am I going to have clean clothes today? Where am I going to sleep tonight? All of these things on top of, how am I going to get high? You are walking around with duffel bags with all your stuff in it you because you don't have anywhere to stay."
The hardest thing for Connie was to admit she had a problem.
"For a long time it was embarrassing and I didn't want people to know. But it's who I am. It's who I was. Everybody does things that they aren't proud of in their life."
Connie says she was exhausted, afraid and tired. She feared ultimately she would die if she didn't seek help. Still, she says she faces judgment for taking Subutex.
"People say well you are not clean. Well maybe I'm not, but I have a prescription for what I'm doing so I'm not doing anything illegal. I don't have to worry about getting trouble or going to jail," she explained.
Connie agreed to follow Dr. Benjamin's rules. We talked her during her ultrasound at 32 weeks.
"Coming here keeps me on track. I know I have to take a urine screen or they won't give me the medicine. If I fail, I won't get my medicine. I depend on that to keep me on the straight and narrow."
With prenatal care, counseling and Subutex, Connie's baby Giovanni was born at 38 weeks and four days, just before Christmas 2016.
Nurses were ready for his withdrawal that followed. Doctors gave Giovanni diminishing doses of morphine to ease his pain. His legs were scratched from the repeated movements that rubbed against his diaper. His chin was scabbed by a compulsion to excessively suck on his hands and pacifier. "I really didn't expect it to be like this," Connie said from the Ronald McDonald house as she waited for her son to get better.
"What happens to these kids?"
It's difficult to predict how children exposed to drugs in utero will progress long term. It's a real concern for Marion County Juvenile Court Judge Marilyn Moores.
"My role is first and foremost to protect the child," Moores said.
After reviewing the NAS cases, Moores decides where the babies will go when they leave the hospital.
"What happens to these kids? They were born addicts ok? We titrate them down, they go on. But, they were an addict. So what happens when you are sixteen and you break your foot playing football and they give you morphine? I don't know. I haven't been able to get any doctor to tell me," Moores said.
She reports a recent surge in NAS cases that has yet to plateau. "We see tragedy, 23-24 cases in the morning and 23-24 cases in the afternoon, every day."
"We've had cases where the mother is so drug addicted they have the baby and they leave the hospital even before appropriate discharge. They are leaving against medical advice because they have got to get a fix. They never return for the baby." Moores said.
Moores estimates 25 percent of the time the babies go home with relatives. But she says sometimes finding a relative fit to take custody is difficult.
"I don't send a child home with anybody that I haven't drug tested and you'd be shocked at how many of those relatives are positive," Moores said.
The judge says that's why about half of the babies go to foster care. Addiction is also straining the foster care system - with so many babies and not enough foster families.
When Amber and Laynie were ready to leave Methodist, Laynie was on track to enter the foster system. Amber remembers preparing to say goodbye.
"My caseworker was on his way to Indianapolis from Hancock County to remove her from me." Amber said.
Two moms, former addicts search for stability
At discharge, Amber was homeless and her family support worn out. IU Health staff called around town, searching for a solution. They discovered one spot had just opened up at Volunteers of America in downtown Indianapolis. The Fresh Start Recovery Center is a temporary facility where Amber could live with Laynie and other moms and their children in the same situation. At VOA substance abuse treatment continues. It's supervised support for two months with Department of Child Services oversight.
VOA has just 15 beds on its second flood unit. Plans are in the works now to triple the Fresh Start capacity nearby. But even when the expansion is complete later this year, John von Arx, VOA President/CEO, says demand for rooms will still exceed the space available.
- RELATED: Volunteers of America website
At VOA the mothers are encouraged to stay drug free. "Moms need their babies but the babies need the moms," Benjamin said.
Amber does not have custody of her first two children and with VOA support, she wants to turn things around with Laynie.
"She keeps me in check, that is for sure." Amber said. She knows she will lose Laynie, if she relapses. "At the end of the day I want her to be happy and healthy and if I'm not healthy enough to be in her life, if I am going to be a negative influence on her and her life she deserves better," Amber said.
Connie has a home and family support and was able to take Giovanni home.
"I think that the baby is a huge motivation for me probably one of the biggest factor in my recovery now, I want to make sure that he never has to see me the way that I was before." Connie said.
As both Amber and Connie leave Dr. Benjamin's care, they will no longer qualify for Subutex. "I will write Subutex for women up to 8 weeks postpartum and my worry is what happens to them after that eight weeks?" Benjamin said.
Benjamin says the DEA waiver allows her team to write prescriptions for just 100 patients. The doctors have to graduate patients from OBOT to provide Subutex for the increasing number of addicted mom's and babies enrolling.
Both Amber and Connie have been counseled to come up with a plan to switch to Methadone or work on weaning off their addiction. "I don't want to be on it forever," Connie said. "This has really given me a chance to take control of my addiction instead of letting it control me."
She is encouraged to see Giovanni progressing. He has a full head of dark hair. Connie and her fiance' are learning what it means to become parents. The drugs that were in Giovanni was exposed to in the womb make the job harder.
"These babies need a whole lot more, swaddled a lot more, given a lot more care. They are not like normal settled kids because they will still withdrawal when they go home" said Dr. Lien.
So far Connie is on track, she has support and it's made a difference. "There are people out there who truly do care. They really do want to help people," Connie said. "I work with my doctors and counselor to come up with a plan to try to eventually get off this medicine and be totally sober and have back the normal life that I thought I ruined."
Doctors know it's a difficult battle. Often they see mom's fail. "The thing that frustrates me quite a bit is when I see a repeat offender. It's not your first time, it's not your second time, this is your third time and you come back with it." said Lien. "Moms need to know now you have a child that is depending on you and their need is probably a little bit more than your need."
Some families reach sobriety and get it together. That is when Judge Moores celebrates. Too often though, she says, the cycle repeats "There are some great success stories out there, just not as many as we would like."
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