By Julia O’Leary
Medill Reports 

Xavier and Damian Llamas were born prematurely with medical complexities. After spending 10 months in the NICU, the twins received care at Almost Home Kids for three months. Their mother, Francennett Llamas, received training and practiced providing care in the home-like setting. 

Kasey Macha and Kristi Noonan both experienced stillbirth after carrying their pregnancies to term. After the loss of their baby girls, the pair got involved in Star Legacy Foundation and work to educate, support and connect families going through the same experience.

 

 

 

TRANSCRIPT: 

O’LEARY – Nonprofit work isn’t easy. It often comes with little recognition, less funding and a heavy reliance on volunteers and dedicated employees. But nonprofit organizations serve as the strongest advocates and change the most lives. There are over 1.5 million nonprofits in the United States and around 10 million worldwide. It’s impossible to know them all. Most people are introduced to certain nonprofits when something changes in their own lives that causes them to seek help and resources. This is the case for two Chicago-based organizations that were started when mothers shared a common experience over child loss and child care. Almost Home Kids and Start Legacy Foundation are two organizations working to make a difference in their communities. I’m Julia O’Leary. Those stories tonight on Difference Makers.

Francennett Llamas gave birth to twin boys in an emergency C-section at 25 weeks and five days. They were just 12 inches long and weighed about as much as a pair of shoes. Xavier and Damian had to be resuscitated at birth and were rushed to the NICU, where they stayed for 10 months, undergoing countless surgeries in an attempt to save their lives. Both twins had patent ducts, arterial SIS, or PDA, which is a congenital heart defect common in babies born prematurely. Sometimes that hole in their heart will close on its own, and it did for Damian, but Xavier was rushed into emergency surgery. Fortunately, the surgery was a success, and Xavier stabilized. But Damian was worsening. This was only the beginning of a back-and-forth battle for survival and their future as children with medical complexities.

Xavier was recovering from heart surgery when doctors found a hole in Damian’s small intestine, resulting in immediate surgery.

FRANCENNETT LLAMAS – if it worked, it would have been a miracle because he was this big. So you can imagine his insides.

O’LEARY – Insides that doctors said had the consistency of wet toilet paper and a total of five holes in his small intestine, forcing 10 centimeters to be cut out.

LLAMAS – His intestines actually ended up having to be out of his body in a bag for six months because we had to wait for the intestines to actually mature and be solid enough to be able to hold the suture and not be mush. There were multiple attempts throughout the six months, made to kind of close up the wound to kind of just bring it closer and closer and closer. It’s just that it’s very hard when it’s premature baby. Every, you know, trying to grow. But he’s also not eating because he can’t hold anything.

O’LEARY – Damian had to receive nutrients through total parenteral nutrition, or TPN, in an IV, which caused extreme swelling in his body

LLAMAS – He was born at 1 pound, 13 ounces. He swelled up to 8 pounds of pure liquid. He was like a starfish, because he couldn’t move anything. So getting an IV in was impossible. So at one point he had an expired IV and, we had to leave it in because that was his only lifeline. You know, with that fluid, it became a barrier for surgery for anything, any progress, because you need anesthesia, you need IVs for everything. And we can’t risk any more fluid anywhere.

O’LEARY – During a surgery attempt to close his open wound, the excess fluid caused so much swelling that Damian was forced to go on a ventilator.

LLAMAS – Time went by, his lungs somehow took a turn. I don’t know if it was all the praying or the crying or the medical attempts, experiments, but they got a lot better, a lot more stable.

O’LEARY – But the twins both needed tracheostomy tubes and ventilators to help them breathe, which meant years of complex medical care was in their future.

LLAMAS – When they give you the talk of what the trip entails and what, you know, what’s to come that it’s a possible seven-year or three-year or it could be forever. It depends, you know, that you have the option of not doing it and disconnecting it. You don’t want that commitment. I was pissed. I’m sorry. I told them to not – don’t ever mention that to me. Like, I’m taking my kids home. And if that’s with a trache, that’s with a trache. They let you know that it’s a lot of work and it’s 24-hour care and it’s all this and that. Well, you don’t think of that when it’s your child. Like, OK, it’s my kid. He’s coming with me. I’m going to do whatever it takes.

O’LEARY – Fran said she didn’t know what came after the hospital.

LLAMAS – Every day that you get there, there’s already five doctors waiting for you, seven in the morning because something happened. And it’s just like all you care about is being there and getting there. And then you don’t leave until it’s dark outside again and there’s no sun. And you’re already there again like, we’ll worry about the outside when we’re ready to go outside, you know? So I didn’t know about the transition to get home or going straight home. All I cared about was get them well and then we can go home. hey started to mention almost home kids. 

O’LEARY – Almost Home Kids was developed in 1992 by two Chicago mothers who had children with complex medical conditions. At the time, the only option to care for kids with complexities were in institutionalized settings. But those two mothers envisioned a different setting for children and their families. They envisioned a place for care, education, training and growth, all in a setting that feels like home.

DAVID KRUGER – A child shouldn’t grow up in an inpatient unit. And whether it be the pediatric ICU or the neonatal intensive care unit or the in-patient unit, it’s really that there needs to be a transition. 

O’LEARY – The transitional phase from hospital to home is a crucial one that often gets overlooked. Children become medically stable enough to leave the hospital, but parents need additional training and preparation before going home, where they’ll be solely responsible for their child’s complex care.

CHARLES MORROW – When a child is still in the hospital, there is a tendency for families to sort of leave it to the medical team to take care of their child but had to sort of sit back and try to learn as much as you can. But ultimately, you’re not taking care of the child, and that all of a sudden transitioned to, OK, now you do need to take care of the child. That doesn’t just happen at discharge, right? And so Almost Home Kids provide a place for that to happen. So not just for the families to actually get the ongoing training but also for them to sort of mentally prepare themselves that they are now, you know, the child’s biggest advocate and they’re now sort of in charge of this child’s, you know, day to day. 

O’LEARY – Almost Home Kids has three locations in downtown Chicago, Naperville and Peoria. Each location has 12 beds,  a kitchen for preparing meals and medications, and a living room for playtime.

MEGAN SULICH – Our kids range from graduates from the NICU – so newborn babies all the way up through kids who are 21 — until they get to their 22nd birthday. Most of our younger kids have graduated from the NICU, usually they were born premature – sometimes extremely premature — they have different genetic conditions that just require them to have some different needs in terms of their day-to-day living. Most of our kids have tracheostomies, and a lot of them use ventilators. A lot of them have different types of feeding tubes but are able to live full healthy lives. Just, their parents need a little of training to help them do that. 

O’LEARY – During this adjustment period, families get hands-on training from the nurses that they may not have received in the hospital.

SULICH – The most important thing for our nurses when they’re training families and caregivers is to get an assessment of kind of where they are at already. Some families and caregivers have been doing a lot of training in the NICU, and all they really need to do when they come to us is get used to their own child’s equipment because a lot of times it’s different than what’s in the hospital. We have other families that come that are still are dealing with the news that this is going to be their new normal. They’re grieving the life they thought they were going to have, and they need a little bit slower and some emotional support until they’re ready to do a lot of the training. And what our nurses do, is we have education binders for every family, and they go through and evaluate the kiddo and see what are their diagnoses and needs, and they print out step-by-step sheets, and we just start going through them. 

O’LEARY – Instruction for families is through repeated demonstrations, practice and lots of …

SULICH – Encouragement I think is the biggest thing. Sometimes these families are ready before they realize it. And it takes the nurse standing next to them saying, “No, you know how to do this. I’m here if you need me, but you know how to do this.” 

GROTTO – It reminds me of when I was a new nurse. It’s an anxiety-inducing thing, caring for someone and doing these sterile procedures. But we just try to keep them positive and encourage them that they’re doing a great job and that they’re going to be totally capable of taking care of their baby at home. 

O’LEARY – Children are able to stay at Almost Home Kids for up to 120 days. And in addition to training for families, the kids also receive different therapies for their development. 

SKIBLEY – The fact that the physical therapists come here and work with the patients, the speech therapists come here and work with the patients. You know, we have child life here, you know, most days. So we will get them as far as we can in terms of their developmental outcome.

CHRISTIANA AYOMIDELE – I think everyone that works here is a part of the kids’ village. So that includes the nurses, the CNAs, child life specialists, physical therapists, occupational therapists, even the volunteers. They are a key part of these kids’ villages. I know there was a kid here, he was here for a couple months, and he took his first steps here. And that was such a special moment just to see him actually developing and all the work the therapists put into him – and to see him progress. It was such a beautiful sight. 

O’LEARY – A site that wouldn’t be possible without that village where everyone plays an important role, from medical care to making sure that the kids are just being kids.

ALEX SCHOBER – I think these kids, you see them a lot of times, and it can be very overwhelming seeing all of the equipment they come with and everything they’re hooked up to, but at the end of the day, they’re really just kids and they love to smile, and it’s really fun to see them open up and express. 

O’LEARY – The children who do get to stay at Almost Home Kids are only a handful from a growing population. The National Institutes of Health reports the rate of children with medical complexities is increasing at about 5% per year. Despite the demand, the U.S. doesn’t have a national system to support legislation and funding.

KRUGER – One of the challenges that we have here in the state of Illinois is that, you know, we’ve been locked into certain rate increases, which happen for hospitals. It’s generally every year to every three years. For us, it’s been about every six to seven or eight years. So costs of health care continue increasing. But our reimbursement has stayed the same. So it makes it even more challenging to achieve the goals that we want to achieve without either higher fundraising and or preferably, you know, better reimbursement from Medicaid.

O’LEARY – The cost is also substantially lower for a child to stay at Almost Home Kids instead of the hospital, which can cost upwards of $60,000 a month, according to a report by the National Institutes of Health. Almost Home Kids is relying on legislative changes to continue providing this care in the future. For kids like Xavier and Damian, who after 10 months in the NICUspent three months in Almost Home Kids where they turned 1. Flash forward one year later and the boys just celebrated their second birthday. Only this time they were at home.

LLAMAS – One is walking and you see him running, and then you know we’re preparing to do the event. And it’s just like we were just thinking of, you know, when we were going to do the surgery. And we were just telling us that it could be seven years and, you know, it’s just so many things. And when you talk about the story again, like you’re thinking about when Damian couldn’t move, so many good things are happening. It’s like, well, it was just yesterday. I still email people here. I still call, we’re still in touch. We still send pictures. They still check up on the twins. It’s still a community. You know, I would it’s forever, we think, for some kids. It’s honestly set us up for a great start. 

O’LEARY – Fran says the boys are hoping to be off their ventilators during the day by the end of 2023 and a year or so after that. They hope to be off the vents completely, which would beat their initial estimate of seven years. We’ll be right back.

O’LEARY – Chances are, you know someone who’s been affected by neonatal loss, even if you didn’t know it. In the United States, 1 in 4  women will experience the death of a baby during pregnancy or infancy in their lifetime. Each year, 1 in 160 pregnancies end in stillbirth, which is when a baby dies in the womb after 20 weeks of pregnancy. In recent decades, modern medicine and improvements in maternity care caused a reduction in the rate of stillbirths. But according to the CDC, that rate has halted. Why? The founder of Star Legacy Foundation seeks to find answers to that question.

O’LEARY – So how did you come to found this organization?

LINDSEY WIMMER – Well, I actually was introduced to this kind of community, if you will, when my son was stillborn and my first pregnancy went absolutely perfectly, ended with my son being stillborn at term. And when I started to kind of get past some of that initial bereavement fog, I really kind of leaned into that science background about why didn’t I realize that this could happen, but why didn’t I realize how often this is happening? But there was little to no research or really prevention initiatives, efforts and education towards that, that I could find anywhere. And so we said, “Well, how can we use what has happened to us to try to do something positive?” 

O’LEARY – And how many women is this happening to? What are some of those numbers? 

WIMMER – So in the United States, we have about 21,000 stillbirths every year, and then we have about that same number of neonatal losses as well, which is the first 30 days of life. There’s estimates that anywhere between 50,000 and 100,000 babies are miscarried or stillborn in that first 20 weeks of gestation. But there’s so much silence and stigma, and there’s so many misconceptions that surround all of these terms and the type of loss. Most of our families that experience stillbirth, one of the first things they will say is, “I had no idea this was even a possibility or that this was something from, you know, hundreds of years ago that that we fixed.” We are more technologically advanced that these kinds of things, especially when you have otherwise healthy situations in front of us, it just never enters most people’s minds that it could end so tragically.

O’LEARY – Why are they still around then? Because it does feel like something that modern medicine should have figured out by now.

WIMMER – Most directly, I would say lack of investment into research because it is historically one of the least funded areas of research in all of medicine. We’re still at a stage right now where about 50% of all of the stillbirths in the United States do not have a known cause of death. And so when we don’t even know what is causing these babies to die, it becomes really hard to know how to prevent them.

O’LEARY – So what are kind of the specifics that you’re doing for these traumatized families and in their healing process?

WIMMER – So in terms of family support, we offer several programs that are designed just to kind of reduce some of that sense of isolation and give them a supportive place to remember their baby. And so some of that is done through events that allow families to just be together and, you know, honor their babies in whatever way feels helpful. But also then it helps kind of create that community so that you realize that you’re not quite so alone. And so we do a lot of those types of events. We have a series of support groups that are available nationwide. We also have a peer-support program that hooks families up one to one  with someone else who’s had a similar situation. We do a lot of education for health professionals and for families both. So we want to make sure that grieving families have access to lots of solid evidence based really, you know, kind of good medical information in terms of grief and how to navigate that. It really is inspiring to see how so many families have done amazing, positive things out of tragic circumstances.

O’LEARY – Lindsey said pregnancy loss is a tough space to exist in as a nonprofit. But running Star Legacy has been a crucial part of her own healing process. This is a similarity between many of the women at Star Legacy, including Kasey and Kristi, who are co-chairs of the Chicago chapter. Their involvement following the loss of their babies has helped to grow the Chicago chapter and connect thousands of women.

KASEY MACHA – On May 5th of 2017, I had a full-term stillbirth. At 39 weeks. I was fine at 38. I had no idea it was coming. And one day I woke up and I had been having contractions and thought I was going into labor. But it’s my second, so I didn’t feel like I was in enough pain to go in. And then the contractions stopped, and I had this pit in my stomach. Something is wrong. And I was going in for my 39-week appointment at 9 a.m., and I went in and she was gone. She had no heartbeat. So that’s kind of the before and after of me. The after of May 5th, her name was Charlotte or is Charlotte Mackenzie Macha. She was 6 pounds, 11 ounces and 19 inches, and she was born at 6:58 p.m. My OB was on vacation that day. I knew she wasn’t going to be there. So they took me to the ultrasound room, and this woman I’d never met was holding my hand, and she said, I’m so sorry. There’s no heartbeat. There’s no reason for me to go home. Like, I had to deliver this baby, and I was already dilated. So I was like, laying on the ground. My husband got there, and I just said, “She’s gone. She’s gone. She’s dead, and I have to go deliver her.” And I came home four  hours after, probably a little bit less after I delivered her. I just knew that once she came and I held her and I took pictures and I did all those things, I couldn’t. I just couldn’t go to the postpartum floor. I just couldn’t do it. That was it. We got in the car. There was an empty car seat in there. I drove home. 

O’LEARY – So sorry that that happened. 

MACHA – I get that a lot. And I think it’s the right thing to say. It’s shocking for people that I’ve met, like, you know, many years after they find out about it later or sometimes in my social media post about it, you know, and you get people say things like, “Well, at least you can get pregnant or at least you have Lucy,” which is my oldest daughter, who was already alive. And I don’t want “at least.” I want my baby.

O’LEARY – Kasey and her husband chose to perform an autopsy on Charlotte, and luckily, she was part of the 50% of stillbirths that do have a known cause of death.

MACHA – What the autopsy said was she died from the presence of high drops caused by fetal anemia. So if she was anemic, we didn’t know it because of that. She had high drops, which is basically where your body fills with fluid, and her lungs filled with fluid and made her heart stop. So she died. I think knowing was good for me. I think so many women have autopsies or choose not to, and this just unexplained. I think there’s a lot of work to be done with legislation, with death certificates, with honoring these moms who have these babies. When you don’t have a birth certificate or a death certificate, it didn’t exist right? So she has no birth certificate. She has no death certificate. According to everyone in the world, in the government or most people, she really didn’t exist. It’s disappointing and it’s hurtful and it’s like mind-boggling. She is not recognized to the world — nothing to the world. I mean, to me, she’s everything. Star Legacy Foundation has done a lot of work around that. But it’s state by state. So it’s just going to depend upon when it happens.

O’LEARY – Why do you think it is hard to find women who’ve experienced this?

MACHA – I think a couple of things. I think early on after I lost her, I just remember the first week I was embarrassed and looking back on it like, why was I embarrassed? Like I did nothing wrong. But at the time, I had no idea. But I think women feel ashamed. I had gone to a few support groups and kind of really hadn’t found my spot. Someone had told me about the Star Legacy, and there was a meeting getting put together, and we met at a Panera and it was like six women who had all had full-term stillbirths. And I was like, I found people. 

O’LEARY – And two of those women are her closest friends to this day who remember their baby girls born in May, June and July with a dinner each summer.

MACHA – And all my friends that I have from growing up and my sisters and all the moms that I know, they’re phenomenal support. But until you have a full-term loss and don’t bring home your baby, you really need to find someone who’s gone through it. So it’s been a blessing for me to meet so many inspiring women. The most rewarding work that I’ve done with Star Legacy Foundation, I have been a peer companion. And they match you with moms who are willing to speak with another mom who’s gone through what you’ve gone through. I’ve had two moms come to me. I’ve met with them. I’ve watched them have their next pregnancy and deliver. And it’s exceptionally rewarding because I wish I had that, and it’s important to have those people. So I love being a peer companion. And I think I’ll be a peer companion forever. Honoring her and helping the women that came behind me will be the reasons that I will continue with Star Legacy. 

KRISTI NOONAN – I first got involved in Start Legacy, actually, after the loss of my daughter, Grace, back in 2019. We lost her in February. And surprisingly, for as common as this can be, sometimes, it was incredibly hard to find resources. And I just went searching for everything I could, Googling the heck out of everything. Pregnancy loss-related, stillbirth-related, and Star Legacy popped up as one of the organizations that did. They provide a lot of support for families after loss, but what I really liked is that they do a lot of work with education and research, trying to figure out the causes of stillbirth to begin with so we can make change around that.

O’LEARY – Kristi was sick for most of her pregnancy, but days before her scheduled C-section, she knew something was seriously wrong.

NOONAN – I called the doctor the day before and told them what was going on and said finally, like, I’m like, “This can’t be normal.” And lo and behold, they said, “You’re nine months pregnant. That’s not that abnormal,” and we were supposed to be going for our final ultrasound that day. And instead, you know, I said to my husband, we’re not going to the ultrasound, we’re going to the hospital. We found out she was gone when we got into triage and they did the Doppler and rubbed the Doppler over the belly a few times and they couldn’t find a heartbeat. And they would just say, we can’t find the heartbeat, we’re going to try again. And they did that three times. And then they brought in an ultrasound, and they couldn’t find it on the ultrasound. And so it was probably five times in a row using different methods. They would say, I’m sorry, we can’t find a heartbeat. We’re going to try again. And finally, they just — I don’t even remember the words at this point, but they couldn’t find it. And my husband dropped to his knees and grabbed my hand and I squeezed his hand. And that was the first time that we found out that she was gone. And we had no idea why.

O’LEARY – Meanwhile, doctors were running tests on Kristi and discovered her life was also at risk.

NOONAN – It turns out, I had a pregnancy condition called acute fatty liver of pregnancy. And it’s a very rare, very life-threatening disease. You don’t know what causes it. It comes on in late pregnancy. The condition my body was in when I went into the hospital, my liver was shutting down, my kidney was shutting down, my blood sugar was at a critical 26. My blood was acidic, it wasn’t clotting. And so they couldn’t give me an epidural because I would bleed out. They couldn’t do a C-section because I would have bled out. And so all they said was, Kristi, you’re very sick. And the only treatment is to deliver the baby as fast as possible and get you to the ICU.

O’LEARY – What do you do today to honor Grace and keep her alive in your life?

NOONAN – Yeah, we talk about her alive. My 7 year old actually is. He will not let us forget any time if he’s ever with me. In fact, it happened not long ago. Someone had asked how many kids we had, and I mentioned two, and he very quickly came in and responded, “No, we have three, Mom, don’t forget Gracie.” And he went on to tell this person that he has a sister in heaven. But every year on her birthday and Grace’s birthday, we put together care packages of things that I found helpful after losing Grace. And so each year I’ll put together as many as Grace would be old. So this past year we did four packages, and there’s a book and a candle and a teddy bear and just some, you know, things that I had liked. And we take those to Northwestern, where Grace was born, and we donate those and they give them to the next family that has a stillbirth. I actually had a mom not too long ago reach out to me. She had received one of the care packages. It might have been two years ago. I still don’t know her name, but I leave my phone number in the package just in case. And she reached out to me, and we exchanged some text messages, and if that one person that I’ve been able to, you know, touch their life and give them hope on the hardest days, then, you know, that’s all I can ask for.

O’LEARY – Grace was named after Kristi’s grandmother. But her name means a lot more.

NOONAN – She has shown me so much more grace for myself, for others, empathy. Growing up, I always really embraced strength as a quality of mind, and I always prided myself in being strong, a strong woman. And I struggled a lot, too, to kind of deal with the reality that strength may be what caused us to lose her, because I didn’t go in and get checked. I tried to power through. I wasn’t that sick even though I was literally dying. And so I grappled with that a lot, is that that most prided quality of mind could be the very thing that killed my daughter. So coming off of that and changing that, my idea of strength is very different now. Strength in emotions and conviction and the vulnerability that comes with it and being open to talking about that and being vulnerable in front of each other, that’s not weakness. That’s actually a sign of strength. I have a tendency to give so much credit to Grace, right? That she’s the one that has driven me to do this. But I think with Star Legacy, we had our first annual walk last year in October, and we’ve got another one coming up this October. And we had one woman who was older, maybe in her 60s, and she found out about the walk from like a community bulletin board and she took a bus. I don’t even know how many busses and trains to get to the walk. And she showed up by herself. And we had last minute made a sign for her daughter that she had lost ages ago. And to see her so proud so many years later, to be able to carry her daughter’s name on that sign and do this walk in honor of her daughter, those are the moments that matter. The one thing that I would encourage everyone to do is ask those questions. Say those names, don’t shy away. It goes back to the vulnerability thing. Don’t shy away from those hard conversations because they matter. They matter to the person that lost the baby. Star Legacy as an organization has so many resources to provide to be able to guide family and friends in how to talk to someone that lost a baby or what to do. And so many different ways to get involved in honor of your friend, your sister, your neighbor, your aunt, whoever it is that has gone through this. The more we talk about it and the more we bring light to it, the more we shine light on it, the better chance there is of changing the statistics. 

O’LEARY – October is Pregnancy and Infant Loss Awareness Month. Specifically, October 15th is Pregnancy and Infant Loss Awareness Day. On this day, families create an international wave of light by lighting candles at 7 p.m. local time all over the world to honor babies. Gone Too Soon Star Legacy Foundation will also host its second annual Remember Us Still Walk on October 15th. 

O’LEARY – I want to say thank you to France, Annette, Lindsey, Casey, Kristi and their families for sharing these incredibly personal stories with me and trusting me to share them with you. I have the deepest respect and admiration for each of you and to everyone at Almost Home Kids and Star Legacy Foundation. Your strength, determination and endless compassion are making a difference in this world. Thank you for watching. I’m Julia O’Leary.

 

Julia O’Leary is a video graduate student at Medill.