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The Affordable Care Act is here to stay — for a while at least. NPR looks at tweaks that could help stabilize the health law’s marketplaces.

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Kavita Patel worked for the Obama administration and helped draft the Affordable Care Act. She tells NPR’s Kelly McEvers about the single biggest area of the health care law that she sees as in need of strengthening.

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When Kathleen Muldoon had her second child everything was going smoothly. The delivery was short, the baby’s APGAR score was good and he was a healthy weight.

“Everyone said he was amazing,” says Muldoon.

But when a doctor noticed that Gideon was jaundiced, everything changed. Nurses put him under a fluorescent light to treat the problem. But it didn’t work. Instead, he developed a red rash all over his body. Blood work indicated newborn Gideon was infected with a virus Muldoon had never heard of: Cytomegalovirus or CMV – a virus that can cause severe birth defects.

Muldoon, 40 of Peoria, Ariz., remembers the pediatrician coming in to deliver the bad news.

“He couldn’t even make eye contact,” she says.

Gideon was diagnosed with extensive brain damage, spastic quadriplegic cerebral palsy, visual impairment, epilepsy and microcephaly – that’s the neurological condition also caused by the Zika virus, where the baby’s head is abnormally small. Gideon spent the first four weeks of his life in the neonatal intensive care unit.

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Kathleen helps her son Gideon get his glasses on. Part of Gideon’s brain was damaged during development, which effects his vision.

Caitlin O’Hara for NPR

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Caitlin O’Hara for NPR

Gideon’s case is unusually severe. Every year about 40,000 babies are born in the U.S. infected with CMV. Most won’t have any symptoms. But one in five will have CMV-related problems, like hearing loss, cognitive delay or neurological problems like Gideon.

Cytomegalovirus Is Everywhere

Like cold and flu viruses, CMV is transmitted from person to person. It travels in bodily fluids like blood, urine and saliva. It is extremely common, according to Dr. Joseph Bocchini, a pediatric infectious disease specialist with Louisiana State University.

“Cytomegalovirus is everywhere,” he says. It is hard to avoid.

By middle age, more than half of adults are infected. By age 5, nearly 1 in 3 children have it. They pick it up from kissing or touching someone or something, like a door handle, table or toy that’s been contaminated. The virus can live on these objects for hours. Once you’ve been infected with CMV, the virus stays with you for life.

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Kathleen helps Gideon into his chair while his sister Genevieve plays with her dolls, one of whom has a wheelchair.

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Caitlin O’Hara for NPR

For most people, CMV isn’t a problem. It rarely causes symptoms and if it does they’re pretty mild, similar to a cold, says Dr.Brenna Hughes, an associate professor of obstetrics and gynecology at Duke University School of Medicine. CMV usually just causes sniffles and possibly a low grade fever, she says.

However, CMV infection can cause serious health problems for people with weakened immune systems, such as individuals with HIV or those who have an organ transplant. And it can be a big problem for pregnant women.

Timing Can Make All The Difference

CMV can pass through the placenta to the fetus, but that doesn’t happen very often. If a woman was infected with CMV before getting pregnant, there’s a less than 1 percent chance she’ll pass the infection on to her fetus. And even if the baby is infected with CMV, the majority don’t have any symptoms. But timing can make all the difference, says Hughes.

If a woman gets infected for the very first time when she’s pregnant, the virus is more dangerous “probably because there’s more virus and less of an immune response already present in the mother,” says infectious disease specialist Bocchini. About 10 percent of these babies will likely have CMV-related problems and about 3 percent of them will be severely affected like Gideon.

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Muldoon helps Gideon stretch as he wakes up at their home in Peoria, Ariz.

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Caitlin O’Hara for NPR

The stage of pregnancy when first infected also makes a difference. If the mother’s in her first trimester, when organs like the brain are developing, the consequences can be devastating. Doctors told Muldoon she was likely infected during her first trimester.

Today, Gideon is 3 years old. He uses a wheelchair, can’t see well or speak, but he loves sounds and music. He giggles loudly when he hears his mother sing. But Muldoon is worried that even his precious hearing may be in jeopardy. CMV can cause hearing loss three to five years after the initial infection, and Gideon is starting to show some hearing loss in his left ear.

‘I Had Never Heard Of This Virus’

When Muldoon reflects on her pregnancy, she is astonished that she didn’t know anything about CMV before she had Gideon, especially since she’s an anthropologist who teaches anatomy to medical students at Arizona’s Midwestern University.

“And yet I had never heard of this virus,” she says.

Muldoon works as an associate professor at Midwestern University, where she teaches anatomy. She had never been told about CMV.

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Caitlin O’Hara for NPR

Muldoon’s not alone. A survey from the National CMV Foundation found only 9 percent of women knew about the virus and a study by the Centers for Disease Control and Prevention found fewer than half of OB-GYNs discuss CMV with their patients.

Hughes, who is also a spokesperson for the American College of Obstetricians and Gynecologists (ACOG,) says pregnant women are generally told the best way to avoid infection is “careful hand washing,” and to avoid interacting with sick people.

Until 2015 ACOG recommended more aggressive prevention efforts, especially for women who are around toddlers, who can be hot zones for viral transmission with all their dribbling and drooling. They recommended pregnant women wash their hands every single time after they handle a child’s toy or laundry and not to kiss a child on the face where contaminated saliva might be present. These suggestions were scrapped when no conclusive evidence was found that they actually prevent infection, says Hughes.

There’s currently a debate in the medical community about whether to screen all newborns for CMV. Many doctors are skeptical, since there is no proven treatment. One study suggests antiviral medication in the first six months of life might decrease the risk of later hearing loss and cognitive decline.

“This is a challenging virus,” says Dr. Mobeen Rathore, an infectious disease specialist with the University of Florida. “We need better diagnostic tools, better treatments and better ways to manage infection,” he says.

Obstetrician Hughes agrees, and says further research and larger studies are needed. She notes that Congress approved $1 billion to support Zika virus research and prevention, but CMV does not have a line item for funding in the annual budget — this, despite the fact that CMV is far more common in the U.S. than Zika.

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It could be a tough week for President Trump and Capitol Hill, after struggling to pass the health care replacement bill. Jim Hobart, a Republican pollster, talks us through what to expect.

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We look at the House Freedom Caucus, a key Republican faction that opposed the American Health Care Act. The GOP healthcare bill was later withdrawn over lack of support.

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Undergoing treatment for cancer is hard enough by itself. And for many cancer patients who spend most of their time in a hospital, it gets even harder with the loss of basic comforts. The hospital’s sterile environment, the fluorescent lights and the disposable gowns do little to make medical treatment more bearable. Nikla Lancksweert, wanted to do a little something to help with that dehumanizing experience, focusing on an alternative for those uncomfortable hospital gowns.

Lancksweert is co-founder of INGA Wellbeing, which creates fashion-conscious clothing for patients. The 41-year-old entrepreneur who’s originally from the U.K, lived in Philadelphia for several years before moving to Brussels, Belgium, where she’s now based. She named the clothing line, INGA, in honor of her mom, who was diagnosed of ovarian cancer at the age of 52 and then underwent three years of intense medical treatment.

“During this time she often had to put on a hospital gown or sit in her underwear to be examined or treated by strangers,” Lancksweert says on her Website. “It was sad and worrying to see how my elegant, capable mother would, almost visibly, shrink. Be diminished. … Getting her out of the hospital gown and into clothes that looked ‘normal’ but that really worked became my obsession!”

Lancksweert’s mom died on Boxing Day, 2006. And a few years later, Lancksweert got the idea to create the clothing line. She teamed up with former public relations executive, Claire Robinson — whose mom was also a cancer patient — and fashion designer Fiona McGreal and in January this year, they officially launched the full collection of INGA Wellbeing.

INGA Wellbeing offers worldwide shipping and in Belgium and the U.K., the collection is also available via a few specialist online and bricks and mortar retailers. In its short existence, INGA has won awards for health innovation and well-being, among them Henry van de Velde, Janey Loves Platinum and Healthcare Think Tank.

NPR’s Lulu Garcia-Navarro spoke with Lancksweert, who endorses the sentiment, “INGA Wellbeing makes it possible to dress ‘well’ even when unwell,” about the motivation behind her brand and how she’s helping patients feel more comfortable and dignified fashion-wise as they battle cancer.

Interview Highlights Include Extended Web Only Content

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INGA Wellbeing co-founders: (L-R) Fiona Mc Greal, Claire Robinson and Nikla Lancksweert.

Stephanie Derouaux /Les Marquisettes

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Stephanie Derouaux /Les Marquisettes

On how her road to create fashionable hospital clothing began with her mother

My mother was diagnosed with ovarian cancer when she was just 52 years old and suddenly plunged into the world of hospitals and medical treatment. And it was really notable to see how very quickly she lost her dignity. And it’s not intentionally so. Doctors and nurses certainly have every intention of being as respectful as they can of patients. It’s just if you’re wearing the wrong clothes then you have to be helped to dress and undress. Then you might not want to go for a walk, which means you end up sort of staying in your room and you become sort of institutionalized incredibly quickly.

On how she actually happened to start the clothing line

I was lucky enough to meet Claire Robinson whose own mother had breast cancer and who was experiencing much of the same issues that my mother had gone through. And then we realized that we needed to have somebody with real fashion design skills and not just determination. And so, we were lucky enough to meet Fiona McGreal who wanted to help us come up with a set of designs that really work in hospital but that look completely normal. And that for us was the key thing. … we wanted to de-stigmatize health.

On what has to be taken into consideration when designing clothing for patients

We worked with nurses to say, “OK, which parts of the body do you need to be able to get to most frequently?” And so we came up with the women, we have a back opening dress, which is actually the closest thing to a hospital gown. But you would never guess it. I’ve worn it in the playground. I’ve worn it to the supermarket, often meetings — not having had a chance to change — but it has all that sort of ease of opening in that it opens at the back and it also has openings down the arms and an a very discreet opening to the stomach.

On why it’s important to have patients feeling better about the way that they look

If you feel self-confident and therefore in charge of your medical treatment, then you are much more likely to want to get up and move around and ultimately recover faster and get home faster. This is the psychological element but there’s also a very physical aspect of it, which is if you don’t do those things if you just stay in bed, there’s actually a higher risk of infection and you lose your muscle tone much more quickly, which makes walking ultimately harder. So your hospital stay becomes longer.

On naming the fashion company after her mom and what she thinks her mom would think

I think she would be amazed. I’ve got nothing to do with the fashion world and I don’t think I’m known particularly for being fashionable. But I think she would be amazed. And in fact, Inga was my mother’s name but it’s only afterwards that I realized — looking it up — that actually means “a hero’s daughter.” And that’s very much how we feel, that this concept is in honor of the heroes in our life. And I hope brings a great deal of comfort and dignity to others and just break this vicious cycle that patients often find themselves in.

NPR’s James Delahoussaye contributed to this report.

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For Jernica Quiñones, the reality of sudden infant death syndrome, or SIDS, hit close to home this year when a friend woke up on New Year’s Day and discovered the lifeless body of her baby girl.

That’s why Quiñones’ 4-month-old son, Bless’n, has spent a lot of his life so far sleeping in a cardboard box.

The 33-year-old mother of five took part in a program in New Jersey that promotes safe sleep education through the distribution of “baby boxes” that double as bassinets.

“Some mothers can’t buy a Pack-n-Play or a crib,” Quiñones says. And that can lead to bed sharing, a risk factor for SIDS.

The program is a riff on Finland’s well-known baby box, or maternity package, which the government gives to expectant mothers who get a prenatal checkup: It’s the box, plus clothing, blankets and other supplies.

Now that Finnish model is making inroads in the U.S., but with a twist. Instead of being a prenatal incentive, it’s being used to deliver a postpartum safe sleep message.

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Jernica Quiñones and her son, Bless’n. Quiñones was one of the first people to receive a free baby box in New Jersey.

Courtesy of Jernica Quiñones

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Courtesy of Jernica Quiñones

This week, Alabama will join Ohio and New Jersey in making free baby boxes available to the families of all newborns in the state. Parents watch online videos about SIDS and safe sleep and complete a short quiz. They can pick up a box at a local distribution center or have it mailed to them. The sturdy, portable box comes with a firm foam mattress and tight-fitting sheet; also included are breastfeeding accessories, a onesie, diapers and wipes.

New Jersey plans to distribute 105,000 boxes; Ohio, 140,000; Alabama, 60,000. The boxes are provided by the California-based Baby Box Co., which also helps produce the educational videos, hosted on its Babybox University website and tailored to local communities.

“The whole premise is that people like free things,” says Dr. Kathryn McCans, chair of New Jersey’s Child Fatality and Near Fatality Review Board, which is partnering with the Baby Box Co. for the New Jersey program. “It’s about getting the information out there.”

“Through education and awareness, people can make better choices and hopefully we can see fewer children dying,” she says.

There are about 3,500 sudden unexpected infant deaths a year in the U.S. The rate dropped significantly after the launch of 1994’s Back to Sleep campaign, which urged parents to put their babies to sleep on their back. But after a plateau, the rate has seen a slight uptick in recent years.

By comparison, Finland began its baby box program 80 years ago, when nearly one out of every 10 children in the country died before age 1. To qualify, women must get a health check before the end of their fourth month of pregnancy. Now, the country has one of the world’s lowest infant mortality rates.

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In Ohio, the free baby box comes with educational materials, books, diapers, wipes and clothes.

Maddie McGarvey for NPR

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Maddie McGarvey for NPR

In the U.S., it’s impossible to require pregnant women to get a prenatal checkup. Instead, the New Jersey and Ohio programs rely on educating new moms through videos.

With a running time of 15 to 20 minutes, the videos reflect the American Academy of Pediatrics safe sleep guidelines, which includes advice to put babies to sleep alone on a firm mattress, with no toys or soft bedding in the crib.

Ryan Stimpert, a mother of twins in Cleveland, received some of the first baby boxes in the Ohio program, which launched this month. She says she would have been a lot less anxious if she’d had them when her son and daughter came home from the hospital in December. “You don’t have to research, you don’t have to text a friend, you just know it’s a safe place,” the 36-year-old says.

The Baby Box Co. says its boxes are tested to meet Consumer Product Safety Commission standards for bassinets, although they aren’t yet subject to mandatory safety standards. In most cases, the baby box can be used for the first six months of life. The risk of SIDS is greatest between two and four months.

It’s a cool box, and a great hook for safe sleep education. But how effective is this approach?

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Dave and Kyle Stimpert check on Ryan and Nell. They received the free boxes after learning about preventing SIDS through safe sleep practices.

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Maddie McGarvey for NPR

People certainly are attracted by the free baby box. And the program has reached more people in less time than some of the state’s other safe-sleep efforts, McCans says.

Since the New Jersey program began in January, approximately 17,000 boxes have been distributed; in Ohio, 6,000 boxes have been distributed since its program launched earlier this month.

Ultimately, McCans doesn’t care whether babies actually sleep in the boxes.

“I’m not wedded to the box itself. It’s about the education,” she says. And, she says, it’s about making the boxes available to everyone so no one feels stigmatized.

Dr. Kristi Watterberg, chair of the American Academy of Pediatrics’ committee on the fetus and newborn, applauds the effort but worries that the process — learning about the program, going online, watching the videos and taking a quiz — may be too overwhelming or complicated for the people who need the education the most.

“The people who can really benefit from this are those who don’t have any clue what you need when you take a baby home,” she says. “They don’t have the social structure to support them. These are the moms who most need what’s in that box and the box itself.”

Watterberg also doesn’t want to see videos take the place of prenatal care, which remains the most important factor for healthy babies.

A study underway at Temple University Hospital in Philadelphia, a city with one of the highest infant mortality rates in the U.S., may yield some answers.

In the study’s first phase, mothers who delivered at the hospital received standard postpartum talks about SIDS, shaken baby syndrome and other topics. The hospital followed up with a phone call that included questions about risk factors for SIDS, such as bed sharing.

The results: Within 72 hours of leaving the hospital, 6.3 percent of mothers self-reported co-sleeping with their babies — just after they were told not to.

Those findings are lower than the national rate, which is 11.2 percent of parents co-sleeping with infants 7 months and younger, according to the National Infant Sleep Position Study.

“We identified the lack of a place for the baby to sleep as a risk factor for bed sharing,” says Dr. Megan Heere, medical director of the well baby nursery at Temple University Hospital.

The study’s second phase, which ended in November, introduced the baby box and a revamped educational component. Every mother had a one-on-one discussion exclusively about safe sleep with a specially trained nurse. The sessions lasted up to 45 minutes.

At discharge, new moms were given a baby box and taught how to use it. They also got a review of safe-sleep practices and watched a three-minute video provided by the Baby Box Co. The results are expected in May.

Heere hopes the baby box helps promote the cause of safe sleep, but she’s skeptical about the videos.

“Videos can be on and nobody watches them,” she says.

About a month after Quiñones, the New Jersey mom, watched the BabyBox University videos, she can quickly recall what she learned: That breastfeeding reduces the risk of SIDS, that you shouldn’t use bumpers or put teddy bears in the crib. Though she’s not a first-time mom, Quiñones says those facts were all new to her.

And word of the baby boxes has spread: Her sister and a friend have gotten them, too.

“Everyone wants a baby box,” Quiñones says. But the best part of the program, she says, is that it’s raising awareness: “I’m excited even if it saves one child.”

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After yesterday’s pulled health care vote, many on the leftand the right are seeing it as a failure for Republicans — but former House Majority Leader Tom DeLay says it’s actually a blessing in disguise.

Tom DeLay served in Congress as representative for Texas’s 22^nd district from 1984 to 2005, when he resigned in the midst of a money laundering scandal. In 1995, DeLay was elected House Majority Whip and in 2002, he was elected House Majority Leader.

DeLay gained a reputation for his ability to whip votes — he became known as “The Hammer” and still claims he never lost a vote in his time in Congress.

DeLay spoke to Michel Martin on Weekend All Things Considered about how Congressional Republicans can move forward after the failure of this vote.

Interview Highlights

On why the American Health Care Act failed

I did see it coming — I want to kind of put it in perspective, because I’m no guru, but the beginning of the end for this bill started in 2010.

The American people were demanding that Obamacare be repealed. They weren’t demanding replacement — replacement came as a political move by the politicians to respond to the liberal media and to the Democrats, who were complaining that, “If you’re going to repeal, what are you going to replace it with?”

This whole replacement idea is the reason it failed, because when they came and they wrote write a bill without checking with their members — which is always a bad idea — they wrote a bill that basically kept Obamacare in place.

On DeLay’s health care philosophy

I don’t believe health care is a right. It’s a responsibility. The Democrats and Obama feel it’s a right and the federal government has a right to be involved in your health insurance. So that’s where I come from. This whole notion that the government can run a health insurance is doomed to failure in the first place.

The problem is you have some that have been elected in the House and the Senate that we call moderates that believe that the federal government has a constitutional role in health insurance. But the base of the party, as exhibited by the last four elections, wanted repeal of Obamacare because they basically understood that it was wrong and something needed to be done about it.

On how to unite Republicans in Congress

I invented a whole new process of whipping the vote, and I called it “grow the vote.” It was much harder to do, but what I did for 11 years as the Majority Whip and never lost a vote, was I had an agenda, that agenda was developed with our members, and once they bought into the agenda, we would check with our members before we even attempted to write the bill or introduce it, so that we knew where they were.

So by the time the members got to the point of voting, they had ownership in the bill and they wanted to vote for it — I didn’t have to break legs. That’s the way the Democrats do it, and now it’s the way the Republicans do it, if you looked at what happened over the last couple of weeks.

On whether President Trump is tearing the Republican party apart

I’m off of that. I don’t think he’ll tear the Republican party apart. …He tried to work with Congress on a failed strategy and he accepted their strategy rather than demanding his strategy. I think he’s learning. I think this was a good experience for them. To be honest, I think right now, after yesterday, it’s a great opportunity to move forward on Obamacare.

Now we can back up and do the things that should have been done. The situation is we have people that it’s hard for them to afford health insurance right now, and frankly, the health insurance market is totally shattered. And so what we need to do is rebuild that market — and the way the federal government can do that is get out of the way.

I would take Rand Paul’s idea that I heard last night: Come to the Senate floor next week, and pass a bill that allows people with pre-existing conditions to join pools, associations, co-ops, to buy insurance, and show that you’re going to remove the government and the regulatory structure away from it, so that the insurance companies can sell to people the kinds of policies they want.

And while you’re doing all of that, the whole Obamacare implosion that’s going on is going to raise the political pressure to repeal Obamacare. So the whole idea is those that want health insurance and can’t afford it, you’re helping them afford it, and at the same time, getting ready to just repeal Obamacare, and it’s a place for them to go.

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