Kylee and Wyatt Weeks married in September 2019.
The air was hot and humid in traditional southern Indiana fashion, the last of the summer sun glaring down. Sunflowers peeked out of their custom wedding arch. A taco bar and enough cheesecake to feed an army waited inside the church. About four hundred of their closest family and friends peered on as they devoted their lives to one another.
Just over one year later they'd hold each other through the unimaginable.
Kylee knew it would be difficult to have children since she was officially diagnosed with endometriosis when she was a teenager. She and Wyatt had talked about their options from the beginning of their relationship, but Kylee always longed to be a mother to children of her own.
“Since I was a little kid, I’ve always known,” Kylee said.
She recounted being around younger cousins and children at church.
“At church I was always in the nursery,” said Kylee. “I always had a baby. People would see me coming and hand me their kid because they knew I was gonna take it. I always just loved babies. I’ve always known I wanted to be a mom. It was just a big thing for me.”
Once the two were married, Wyatt and Kylee decided not to definitively try for children, but instead to leave it to chance and faith. “If it was God’s time, then we’d be blessed, we’d have a kid,” Kylee said.
In the beginning of 2020 Kylee had her first miscarriage. Their chances of having children of their own looked bleak.
But in April 2020 they finally got a positive test.
“I was so scared. You finally get that positive pregnancy test and then you realize I'm already five weeks along,” Kylee said. “Things are better than they ever have been. I got to the doctor really quick and got an ultrasound and they checked everything out and everything looked really good. But I was still just taking everything just so cautious, like I don't want to hurt or risk anything going wrong here.”
Every week was a new celebration for the couple. 6 weeks, 7 weeks. Their optimism grew. They couldn’t wait to tell everyone, to share their excitement with the world. The twelve week scan came and everything looked perfect.
“And that moment I just saw my actual baby in there,” Kylee said. “And I think that moment, it hit me... I'm a mom. I love this thing more than anything.”
"I think that moment, it hit me, I'm a mom. I love this thing more than anything.”
At nineteen weeks, Kylee and Wyatt found out something was wrong. There was only a centimeter of amniotic fluid in the womb, much less than there should’ve been at that time. A specialist reassured them, telling them all of the baby’s organs were there. However, the doctor didn’t know why there wasn’t enough fluid. For some reason, the baby never began producing her own fluid. A month later, a second doctor was able to tell them why.
She had never developed kidneys.
Without kidneys, Naomi could not take over the job of producing amniotic fluid. All that was left was the small amount that Kylee’s body had developed in the first weeks of pregnancy. The diagnosis was Potter’s Syndrome, a very rare and complicated disease that causes several issues associated with a lack of fetal kidney development. The doctors couldn’t find a definite reason why Naomi’s kidneys never developed, but they explained to the couple that it just happens in newborns sometimes.
“I felt like a failure,” Kylee said. “You're still sitting there blaming yourself and [thinking] those thoughts of knowing... this was your miracle child in the first place. Just to think about that was really hard. I felt defeated.”
The couple was scared.They didn’t know what to do or where to turn. The doctors said there wasn’t much they could do. Naomi had a zero percent chance of life. Kylee, Wyatt, and their doctors didn’t know how much time they’d get with her, and they didn’t know what they could do.
“There was a lot to process,” Kylee said. ”They just told me that this baby has no chance of life.”
The doctors explained that the complications associated with Naomi’s condition were almost always fatal. The absence of amniotic fluid would create many health issues for the baby, the most damaging of which could include a deformed face and body and incomplete lung development. But within the last decade, studies describing a potential treatment called amnioinfusions have shown promise. An amnioinfusion is a procedure where a team of doctors carefully insert a saline solution into the uterus to allow the fetus room to grow within the womb.
“My mom found a story,” Kylee said. “A baby had been saved through amnioinfusions. I mentioned it to our previous specialist and they said it wasn’t a thing. But here’s this story where they actually saved a baby at Johns Hopkins.”
The mother and baby in the study, published by Johns Hopkins Medicine, had the exact diagnosis as Kylee and Naomi, but the doctors had noticed it weeks earlier than they had with Kylee. Kylee and Wyatt told their doctors about what they’d found. Their team of doctors at Riley’s Children’s Hospital in Indianapolis worked through the evening, night and morning contacting doctors around the country to try to get Kylee into the experimental study at Johns Hopkins in Baltimore for amnioinfusions. Kylee was at 24 weeks by this time, 7 days away from being too far along to begin the treatments.
Within a day, she was getting the testing done that she needed in order to qualify for the study. Within that week the couple was on their way to Baltimore.
“We, the doctors, everybody, they thought I was going to be able to get in,” Kylee said. “Everything looked good. She had nothing else wrong with her at all. Her growth was a little behind from the restrictions, from no fluid, but she wasn't obnoxiously small or anything. She was okay.”
They had hope.
Within days they went from defeated, processing the eventual loss of their first-born child, to optimistic there was a chance to save her.
The researchers gave Kylee her first infusion on September 4, 2020, weeks shy of her first wedding anniversary with Wyatt. The pair began preparing to move to Baltimore to be closer to the hospital.
“We were pretty certain we were going to be able to save her,” Kylee said. “We were looking at a long road, [with] all of what it was going to take afterwards. But we were fully ready and really, really hopeful.”
"We were really, really hopeful."
Then, after they returned home, Kylee developed a kidney stone. She believes it was caused by the stress of the situation and traveling. She passed it quickly with little issue, but spent a few days in the hospital to be cautious.
On September 10, 2020, they were disqualified from the study.
“I got disqualified from the study because of a kidney stone which didn't affect [Naomi] at all,” Kylee said. “There was a chance I might get an infection. That was the only reason. I begged them and begged them to let me in. I called every hospital that had a sign that they might actually take me.”
Kylee called and called and called. A hospital in Dallas reviewed her case, but ultimately rejected her because she was almost twenty-six weeks along.
Kylee felt frustrated. “[Dallas] was more concerned about me,” Kylee said. “They were concerned about something happening to me. I told them I don’t care. I don't care if I never have another baby. I don't care, whatever happens. I don't care. I just want my baby saved.”
“They wouldn’t take me,” Kylee said. “I was at the moment of having to accept that nobody’s going to take me. Nobody’s willing to save my baby. I felt defeated. I knew I had tried everything. As a mom, I knew I had to try everything to save my baby.”
Kylee was just over 26 weeks along.
Kylee and Wyatt had to decide how to move forward. They decided to enjoy what little time they were going to get with Naomi. They didn’t know how long she would live. The chances of Kylee carrying her to term were slim, and each week Naomi lived was another celebration.
“We cherished that belly so much,” Kylee said. “Just being able to know she was in there and we knew she could hear us. We took all the time we got just to bond with her.”
Kylee carried Naomi to 37 weeks, to term. In those final twelve weeks, the couple spent every moment learning more and more about their daughter. She loved sweet tea and chocolate milk. Naomi would kick and dance in Kylee’s belly. She’d react to different people’s voices, and she loved when the family cats would purr on her mom’s belly.
"We cherished that belly so much. We took all the time we got to bond with her."
Kylee could feel Naomi’s life inside her. She cherished every movement and moment.
“I knew her better than anyone. She was always active at night. I had that time, just me and her. Everything else was silent and everybody was asleep. She just sat there and kicked me and I kind of just rubbed my belly at her and poked her back or talked to her a little bit.”
Kylee did her best to stay strong.
“I never wanted her to know anything was wrong,” Kylee said. “I never wanted her to think anything was wrong. I know people think she’s just a baby, she wouldn’t know that, but they feel your feelings. When I’d get upset or start crying, she’d kind of kick me, in a way that would kind of just be like ‘I’m in here still, I’m okay.’”
November 30, 2020
On November 30, 2020, at 37 weeks and one day, Kylee went in for her c-section. She said there was a lot of emotion. Excitement to finally meet their daughter, but also fear that they wouldn’t get to meet their daughter alive. They didn’t know what to expect. Kylee didn’t know how she’d react.
“We were so excited to see her face and meet her,” Kylee said. “I knew that was going to be the hardest day. Going in, we were so excited, we were finally going to meet her. But we were sad because I knew this was my last time with her. This was my last day I had my baby.”
Wyatt was allowed in the room while the doctors were operating. Kylee could feel them working inside her from behind the curtain. They had tied her arms down to keep her from moving. The doctor got Naomi out, and Kylee heard a gasp, but no sounds of the baby crying.
Kylee was scared, afraid Naomi didn’t even have the strength to scream.
Kylee and Wyatt had been prepared for their baby to be deformed or smaller than average, since the lack of amniotic fluid keeps the baby squished inside the womb without ample room to grow correctly. But Naomi was a full sized baby, four pounds, eleven ounces and fifteen inches long.
“I saw her and she really was the most beautiful baby,” Kylee said.
They laid Naomi on Kylee’s chest, but with her hands tied down, Kylee was anxious to hold her. She and Wyatt sat in silence for a moment, staring at their daughter.
"She really was the most beautiful baby."
“They always talk about that feeling like when you first meet your baby, that love you feel,” Kylee said. “I can't even describe that love. It was just overwhelming. I can't even explain. It was so amazing.”
Wyatt took Naomi in his arms and held her while the doctors finished sewing Kylee up. They moved Wyatt into another room where Kylee’s mom got to hold Naomi.
Kylee was antsy, worried that her daughter would pass without her there; Naomi cried the entire time she was away from her mother, refusing to settle down until she was back in her mother’s arms.
“I don't think I've ever prayed so hard as that moment when I saw my baby and realized I'd have to let her go,” Kylee said.
“It wasn’t necessarily the miracle I would want, the one that we always prayed for,” Kylee said. “But it eventually turned into more than we prayed for. We were praying for a few minutes and we got four hours. We prayed that she wouldn’t struggle and she never did. She passed away right in my arms. She knew nothing but love the whole time.”
Those were the four hours that they got to be parents.
“We felt like a family in those four hours,” Kylee said. “That's when I felt the most like a mother, I had my baby with me. I just got to hold her and snuggle her and I loved every bit of it.”
Eventually Naomi’s heartbeat slowed and then stopped. She took her last breaths in Kylee’s arms.
"We felt like a family in those four hours. That's when I felt the most like a mother."
The first night after was incredibly difficult for Kylee.
“I just remember the first night,” Kylee said. “Nighttime was our time together. So I lay down and it was the first time laying down on my bed in a long time that I didn't have her with me.”
The family held a small, intimate service a few days later. Kylee’s father made the casket, so she helped design it and picked a custom color. Her father also gave the sermon, and their pastor sang several songs. Naomi was wrapped in a blanket made specifically for her.
“The whole time I had to plan the funeral and the delivery of a baby,” Kylee said. “That’s something no parent should ever have to go through. And I did it.”
The service celebrated the life that Naomi did have. Kylee and Wyatt said a final goodbye, surrounded by their closest friends and family.
“She looked so perfect in that casket,” Kylee said. “She kind of just looked like a little baby doll in there, honestly. But to look at your baby and know that's the last time you're going to see your baby was hard. You should never have to see your child in a casket. And it was the tiniest casket. That should have been a crib, not a casket.”
Kylee and Wyatt decided to have Naomi cremated.
“Your baby should go home with the parents,” Kylee said. “And that way she was able to come home with us.”
After Naomi died, Kylee and Wyatt leaned on each other in ways they could’ve never fathomed just a year before. By their one year wedding anniversary they had already been learning to cope with the knowledge that their first daughter wouldn’t get to live.
“Learning how we grieve in a time like this,” Kylee said. “It was hard.”
Kylee said doctors warned them time and time again that many couples don’t make it through situations such as this. According to the American Psychological Association, 40-50% of marriages in the United States end in divorce. In the event of child loss, the number is often higher.
“It was scary. It was kind of like ’could that be us?’” Kylee said.
The couple learned how to deal with their grief, learned how to communicate with one another through tragedy. The two fought like they never had before. Kylee even chose to live at her parent’s house for a time, to give herself space.
“It wasn't a fun dating scene anymore, the fun newlywed stuff,” Kylee said. “It wasn't going to be the fun getting to be parents stuff like that and learning that. It was learning how we grieve.”
Kylee said she and Wyatt were more focused on their own traumas than on understanding each other. They were facing financial challenges, too: Wyatt had lost his job because of the Coronavirus pandemic; they were fighting with insurance companies over payment for countless doctors’ appointments; and they still had to cover the costs of travel to Baltimore for treatments. Kylee said it was busy and nonstop.
Now, they are doing better. Kylee is studying to take her realtor’s exam while working as an assistant manager at Shoe Sensation in a nearby town and Wyatt got his job back, a valet at a hotel nearby. But the couple are still feeling the sting of major medical expenses.
“I think after everything kind of settled down and we got to just sit and talk about stuff, our relationship got a lot stronger,” said Kylee. “It’s never been this strong before. I think we honestly just needed a breaking point to grow.”
Despite their trauma, the two are looking toward their future. They’re focusing on their goals and the life they want to build for themselves and their future children.
“I think now we realize, if we’re strong enough to make it through that stuff, we shouldn’t really let silly things be what we fight about anymore,” Kylee said.
Throughout their challenges, the couple was not alone, but surrounded by loved ones— their immediate family, their church congregation, and their best friends.
“We have the most amazing support system there ever was,” Kylee said. “It is so big.”
Members of their church prayed over them and helped the couple spoil Naomi every chance they got, from bringing chocolate milk and sweet tea every sunday morning, to feeding her Naomi’s favorite foods to feel her kick. Their friends, old and new, reach out often to check on them. Kylee and Wyatt’s house is often the spot for parties and cookouts with friends and family.
The couple underwent genetic testing to make sure their genes weren’t what caused Naomi’s illness. According to the tests, it was not caused by their genes, so they are ready to try again when they can.
“I loved being pregnant,” Kylee said. “My back did hurt really bad. Then my ankles were swollen and I was obnoxiously sick, but once I got my little bump and I started feeling little flutters and kicks, I absolutely loved being pregnant.”
They still want to have children of their own one day, though they still aren’t sure if it is possible for them. Kylee is still struggling with endometriosis on top of healing a c-section, so there is no guarantee that she will be able to get pregnant again. When they can, they say, they will try and leave it to faith. No matter how or when, whether through adoption, foster care, or a child of their own, Kylee and Wyatt will one day grow their family.
But Naomi’s memory remains.
"I'll always consider her my first child," Kylee said. "I'll always be her mom."
“Imagine a love so strong that saying hello and goodbye in the same day was worth the sorrow.”
Thank you to IU Health Bloomington Hospital, Kylee and Wyatt Weeks and Taffy French Photography, LLC for archival images.
Shot and written by Lily Estella Thompson. Video editing by Lily Estella Thompson and Chris Kohley. Words edited by Melina Walling.