Mom Once Saw “My Sister's Keeper” as a 'F---ed Up' Film. Then She Lived Through the Story with Her Family (Exclusive)

Vida was born to be a daughter, a sister and a lifesaver. When she came into this world last year, she was everything her parents ever wanted and more. Upon her very arrival, the infant brought hope. She brought the promise of a new future, and she was given a Spanish name to symbolize her gift: "Vida," which translates to life.

In a way, life was collected from Vida immediately after birth — not her own life, but her sister's. Maite Rodriguez welcomed her second child Vida on Jan. 9, 2024, and the newborn's umbilical cord blood was extracted and frozen in the hope that the stem cells would be enough to restore something her older sister, Alessia, never had.

Rodriguez, 31, and her husband, Dario, 41, were already in the hospital when her water broke. Then 5-year-old Alessia had been admitted for yet another pain crisis, a complication of her sickle cell disease. The ache was severe, as it always was. Alessia suffered pain crises her whole life, brought on by factors outside of the family's control — stress, dehydration and extreme temperatures.

Sickle cell disease keeps Alessia inside, homeschooled by Rodriguez when she isn't being treated by her familiar team of doctors and nurses at Stony Brook Hospital on Long Island. Even when the weather is predictable, Alessia's compromised immune system increases risk everywhere.

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Pain has debilitated Alessia since the start of her life. As a baby, the constantly recurring crises initially swelled her hands and feet. After age 2, they started appearing all over her body, and the extreme sensation couldn't be managed at home. She doesn't respond to oxycodone or morphine. Alessia's pain is only quelled by Dilaudid, a powerful opioid only administered in medical facilities.

Throughout the first nine months of Alessia's life, she was admitted to the hospital every two weeks, alternating between treatments for pain crises and treatments for fevers brought on by her immunocompromised state.

Her case is rare. Only a very small percentage of those with sickle cell disease suffer from frequent pain crises; most people manage it with minimal complications. The degree of severity is usually determined by the age of 5, but Alessia's doctors concluded that longer-term treatment was necessary when she was just 3 years old.

"A bone marrow transplant was always in the back of our head, just because that's the cure for sickle cell. It's a curative therapy. Once it happens, you're done. There's hope," Rodriguez tells PEOPLE exclusively. "I remember the doctor just sat me down, and she was like, 'We know you don't want to, but it's time.'"

Rodriguez describes her daughter's illness to PEOPLE amid the buzz of a common area at New York City's Metropolitan Museum of Art. The mom of two is blocks away from the Ronald McDonald House, where she and her family are staying as they prepare for a bone marrow transplant that could change everything. The procedure could give the 6-year-old a promising future. It's a chance to start a new life, for Alessia and for all of them.

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Before Rodriguez became a mother, school was her truest calling and greatest passion. She has two master's degrees, one in social work and a second in special education. Rodriguez was in the middle of earning the latter when she learned she was pregnant with her first child at 25 years old.

It was an unplanned pregnancy, but she and Dario had been married for a while and knew they wanted to have kids. Rodriguez also knew she carried the sickle cell trait, and she was aware of the fact that if she conceived with another carrier, their child would have a 25% chance of being born with the disease.

"Sickle cell is predominantly present in people of color. It's usually called, by a lot of people, a 'Black people disease.' It is not. It can be present in any person of color, but particularly in people that come from places that have history or are descendants of people in Africa," Rodriguez explains. "A lot of Hispanic people have it."

Rodriguez is Dominican, and Dario is Honduran, but their appearances differ greatly. "My husband is light-skinned, green eyes. The opposite of me," she notes. They were shocked to learn he carries the trait too.

"We were like, 'No, this can't be. He's white' ... We didn't even understand that he could have this," Rodriguez recalls. "I didn't think of it as an overall minority group thing."

They opted not to test Alessia for the illness while she was in utero. It was already stressful enough to plan for an unexpected addition to their family, and though Alessia was a surprise, Rodriguez knew she didn't want to terminate the pregnancy. She felt ready to be a mom, regardless of how her baby arrived.

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"When she was born, we found out, and then we just kind of took it from there," Rodriguez remembers. Alessia started on medication when she was 6 months old, first with an antibiotic and a folic acid mini pill. At 9 months, she began taking another pill called hydroxyurea. It's a small, daily dose of chemotherapy that she still takes today, and initially, that medication worked like a miracle.

Sickle cell disease impacts the makeup of a person's red blood cells. Instead of normal rounds, the hemoglobin is sickle-shaped, as the condition's name suggests. The crescent cells aren't able to flow as freely through the veins, so they get stuck, clumping up to form blockages that result in the incapacitating pain crises Alessia endures.

As Rodriguez explains, most people with severe sickle cell disease — meaning they have pain crises between one to three times a year — end up needing to undergo a replacement surgery at some point in their lives.

"It's called avascular necrosis. Because the blood isn't flowing as well to that part of the body, there's no oxygen. So that portion of the bone, or that tissue, starts dying," she notes. "By the time there's enough damage, they need a replacement."

Alessia should have had her spleen removed last year. It stopped working properly when she was 6 weeks old, and her antibiotic performed its job of filtering blood instead. The sickle cells were getting stuck in her spleen, placing her in and out of hospital care. Her parents opted not to go through with the spleen removal operation in favor of the bone marrow transplant, which should mend the issue. It should mend everything.

First, however, Alessia was aided by hydroxyurea, which breathes oxygen into the bloodstream. It allows red blood cells to move fluidly, keeping the body hydrated and flowing. For a while, the medication liberated Alessia from her pain, and her doctors incrementally increased the dosage to keep up with her growth.

"It really helped until it didn't," Rodriguez recalls. "About three years ago, she stopped responding as well to it and started getting sick more often, started just having more crises."

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Years later, Rodriguez expects to stop giving Alessia her hydroxyurea only days from now, when she starts the admission process for her upcoming transplant. They are in Manhattan for doctor's appointments, transplant testing and labs. In the upcoming days, Alessia's blood will be removed and replaced in an exchange transfusion, which will ensure that her body is not too reactive to the high-stress preparation treatment ahead.

"The process for a bone marrow transplant is that they kill your immune system through immunotherapy and chemotherapy in order to prepare your body," Rodriguez tells PEOPLE. "It's three days of immunotherapy, four days of strong chemotherapy and then the transplant."

Rodriguez used to visit the vast Metropolitan Museum often during her undergraduate studies in religion and psychology at Hunter College. The exhibitions mirrored her work as she took classes about the relationship between art and theology.

Her daughter appreciates the famed museum as well, so Rodriguez was hoping to bring her along and meet by the Met's indoor play area. Alessia adores the kid-friendly space, but there's a bitter chill in the air, and for the time being, viruses continue to pose a dark threat to Alessia's immune system.

"Being around someone that's sick will put her in the hospital for days," Rodriguez says. Her husband is back at the Ronald McDonald House with Alessia. The Met is too busy and too risky with the transplant days away. "It's not the most beautiful thing to go to the hospital with a 6-year-old that has a lot of medical trauma."

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Like with any stem cell transplant, the donor and recipient must be a human leukocyte antigen (HLA) match. It's rare that parents' HLA will fully align with their child's — both Rodriguez and her husband match only 50% with Alessia. In cases of a sickle cell bone marrow transplant, the best results come from a sibling.

A sibling HLA match gives the procedure a 95% success rate, as opposed to a rate of around 78% with an unrelated donor. It's just another risk Rodriguez and her husband weren't willing to take. They needed to have another child who could provide stem cells for their firstborn.

They wanted to have more kids eventually, and they knew IVF was the only way to ensure their second child wouldn't have sickle cell disease. They were hoping to wait to welcome another baby, but the right time was becoming more and more urgently present. In a new light, IVF wasn't just a way to ensure their child's health — it was a way to provide an HLA match for Alessia.

Rodriguez's feelings were mixed when Alessia's doctors informed her that it was time to produce a donor. It wasn't the route she wanted to take in growing their family.

"With making that decision, there's a lot of guilt," she says, then pauses to ask, "Have you ever seen a movie called My Sister's Keeper? This really resembles some of the plotline."

The 2009 drama — which was based on a novel by Jodi Picoult — revolves around two parents raising a daughter with cancer and her "savior sister," who was conceived via IVF to be a donor for her sick older sibling. The story lingered in Rodriguez's mind after she first watched the film.

"That movie stayed with me because it was so f----- up," she reflects. "When you just think about it as if you're a person looking in and you don't know the story, it's f----- up."

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Then Rodriguez read the book, and her perspective broadened. Her mind was changed. It wasn't a story of cruelty anymore. She no longer understood it to be a matter of whether or not a baby could consent to such a purpose.

"This is a story of love and a family that will do anything to save their kid," she says. "It's a beautiful story, once you understand it. Looking in, it's hard to wrap your mind around that."

It took Rodriguez "a while" to come to terms with the way she resonates with the book and film. "It still haunts me. It's still something hard," she admits.

"I'm having a child, not for the sole purpose of helping this other child of mine," Rodriguez continues, describing her ongoing internal conflict. "I love this child, but before you're born, I need to make sure that you are a match — just in case, but not just in case. I need you to be a match in order to save your sister's life."

She never doubted her love for Vida; Rodriguez always knew her secondborn would be "as special" as her first. When she started looking for a reproductive health doctor, Rodriguez was also looking for a source of support. It turns out that this motive for having a child is more common than expected, and Rodriguez found a doctor who completely understood the emotional battle waging inside her mind.

"We love our doctor, best doctor ever, and she understood it all. She understood the guilt," she explains of the fertility expert. "She kind of just tried to put me at ease as much as she could, telling me, 'No, there's no need to feel guilty. You were going to have more babies. You wanted to expand your family.'"

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Vida's current doctors also know that Rodriguez struggled with the decision, and they make it a point to remind her that the 1-year-old won't be in any pain. Because in actual practice, Rodriguez isn't facing the exact same conflict demonstrated in My Sister's Keeper. If all goes well, Vida will only need to be Alessia's donor once, and she’s already done it.

By collecting Vida's cord blood after birth, Alessia's doctors hoped to save enough stem cells to sufficiently replace her unhealthy bone marrow. They waited a year to proceed with the transplant because they didn't know if the newborn's donation would match her sister's volume in terms of her body size and stature.

If the sample did not contain the right amount of stem cells, they would need to retrieve actual bone marrow from Vida, and by age 1, she would be big enough to undergo the extraction. Doctors would need to insert two needles into her pelvis — her iliac crest bone — and pull as much bone marrow liquid as needed since Vida's would safely regenerate.

"There is no doubt that my little Vida is a hero," Rodriguez says. "She was born a hero, but the guilt's still there."

Preserving cord blood was a far more complicated mission than anyone expected. Rodriguez's water broke while she was 8 months pregnant. She was carrying Alessia in Stony Brook Hospital, where she'd been admitted for a paint crisis. Holding her was the only way Rodriguez knew how to alleviate her daughter's pain, but when she "felt something shift," the mom knew she was facing an emergency.

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"I have all this trauma from having my [then] 5-year-old in a hospital setting since she was a baby, being around hospitals, being around needles, being around all of these things that are not normal for a kid," Rodriguez recalls to PEOPLE. "And you're telling me that I'm going into early birth with another baby, which means that there's a 100% chance that she will end up in the NICU, that she will also have to go through medical trauma that she probably won't remember, but I very much will."

It took Rodriguez about an hour to process her reality and formulate a plan. She needed to make calls and figure out what to do if Alessia was discharged or if her pain became worse. Five hours later, Rodriguez ended up having an emergency C-section.

"Vida came out beautifully, as big as any baby could have been at that age," she remembers. The infant spent six days in the NICU. During that time, Alessia was still admitted for pain crisis treatment.

"When I came out of my C-section, the first thing I did was ask my husband to wheel me down to see the baby, spend some time with her, and then he wheeled me down to the children's hospital to see Alessia," says Rodriguez. "For the next few days until Alessia was discharged, it was me walking back and forth from one place to the other."

Fortunately, they later learned that the doctors collected enough cord blood to promise a better future for Alessia, though the older sister's health took a sharp downward turn in the weeks that followed.

A new complication collided with her pain crisis, and Alessia's parents feared for her life in a far more immediate way. Vida went home healthy, but her sister's pain continued for two months. The doctors had few answers for why it wouldn't subside. It wasn't a crisis; this was a different level of agony, and her gallbladder was the culprit.

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Gallstones can occur in bodies with sickle cell disease, no matter the person's age, but that wasn't exactly what they saw in Alessia's scans and ultrasounds — it was more of a mud-like sludge.

Rodriguez demanded a fix for her daughter's pain, and after one particularly long, painful day in the hospital, her medical team determined that they needed to remove her gallbladder.

The family went home at 2 a.m., expecting to schedule the operation in the coming week. But eight hours later, Alessia woke up with a jarring new symptom: Rodriguez says her daughter was "phosphorescent yellow." Her bilirubin levels had reached a new high.

She had a procedure to clear out her gallbladder and another to remove it entirely, but the operations caused another pain crisis. The process put too much stress on her body, and her family and doctors focused on managing the new issue, which lasted for days. She developed a fever that put her in the pediatric intensive care unit.

Alessia underwent multiple blood transfusions over the course of one weekend, but they kept seeing blood in her stool. It appeared bright red, indicating that Alessia was still bleeding internally.

"At that point, they continued with the blood transfusions, but the more blood transfusions she got, the faster her body went through the blood," her mother describes. "From Friday night to Sunday afternoon, she had like four [transfusions]."

After that final transfusion, Alessia's color returned. She was lively. She could speak and sit up; she was herself again, but only briefly. Within an hour or two, her hemoglobin sank back down. Alessia was bleeding again, but no one knew where from.

"I'm usually very composed in times of stress. I manage myself well in times of stress," her mom states. This time, though, Alessia's critical condition pushed her further than ever before.

She ran from doctor to doctor, begging them to manage Alessia's pain. Vida was crying, Rodriguez's breasts were leaking, and she was still bleeding from her C-section. "I've never felt pain in my body this way where it's just cramps all over my body — just cramps here, cramps there for no apparent reason other than just being under stress," she adds.

Alessia was pricked with five IVs, and none of them worked. Her blood was leaving her body; there was no substance left to pull. Rodriguez and Dario were "losing it" as they watched their daughter suffer, and they were crowded by a widespread attempt to find what was causing the bleeding.

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"You know that s--- is going on when all of the doctors and all of the nurses rush into the room," Rodriguez notes. Once they discovered the source of the bleed, the medical team stabilized Alessia with blood and platelet transfusions to prepare her for surgery.

It took her two weeks to recuperate after the successful operation, but the memory has yet to stop haunting her mother.

"Nothing will ever prepare you to see your child dying in front of you, nothing. And I don't think I'll ever recover from that. Just seeing literally a lifeless body in front of you where you see the poking, poking everywhere, four nurses poking, each one at each limb and they can't find a single vein to give her a blood transfusion so that she could just come back," Rodriguez says through tears.

"Up until that point, my mental health had been okay," the social worker and trained therapist continues. "I know how to use coping strategies. I know how to maintain things. I can handle myself under stress very well until that point. At that point, everything went down the hill. I'm still very traumatized from that. She is. My husband is. We all are."

Alessia understands some of what happened that weekend, at least to the extent that a 6-year-old can comprehend. Her biggest takeaway, says Rodriguez, is that her mother will "fight anybody tooth and nail" in order to help her child.

"After that, because we came so close to death, we isolated almost completely," says Rodriguez. "We don't leave the house a lot."

The near-tragedy amplified the critical nature of Alessia's successful bone marrow transplant and her sister's role in the operation, which is also something the 6-year-old understands on a very basic level. Rodriguez says Alessia knows her donor is Vida, but she might not wrap her head around the implications of that until later on. It's not something their parents want to hide from either of their girls.

Bringing Vida into this world was an intense process that filled Rodriguez and her husband with constant anxiety, so much so that Dario had to start taking medication for his skyrocketing blood pressure. Their IVF journey was laden with the stress of everything they needed to see in an embryo, and the odds of each cycle producing the perfect candidate were slim.

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In the first cycle, Rodriguez's doctors were able to collect 21 viable embryos — 10 of them had sickle disease. The other 11 were a mixed bag: some had defects, and some were healthy but incompatible with Alessia's HLA.

Rodriguez was driving to an early morning dentist appointment when her doctor called with the results: there was only one HLA match that they confidently believed would not result in a spontaneous miscarriage. They were indeed able to get the perfect embryo in her first IVF cycle.

She immediately burst into tears and told them the only way the news could get better was if that one embryo was a girl. When they confirmed her hopes, Rodriguez pulled over the car and wept on the side of the road.

"I wanted another daughter. I am a girl mom — that's it. I'm meant to be a girl mom," she says. "We found Vida on the first one."

Vida bettered her sister's life well before they started preparing for the transplant. Rodriguez says her daughters' bond has been a "beautiful" thing to watch. It's another one of Vida's gifts, but it's difficult to recognize that fact without thinking of her other promises — the hope and life she brought into this world, the reasons why Vida was conceived.

"They love each other. Nobody makes Vida happier than Alessia, and nobody makes Alessia happier than Vida," Rodriguez shares. "But as a mom, I struggle, and I don't know if I'll ever stop struggling ... There is a lot of guilt involved in it, not because I don't love my kid, just because I do feel like I've been using her."

For the time being, Dario and Rodriguez are holding off on giving Vida and Alessia another sibling. They have more frozen embryos to transfer when they decide to have more kids, but they're certain they want to wait a little longer.

That said, Rodriguez will likely undergo IVF again soon to freeze her eggs for Alessia. The strong levels of chemotherapy needed to completely strip back her immune system may also damage her egg reserve. Her parents face another round of risks as they reckon with their young daughter's fertility much earlier than they ever expected.

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They could elect to have one of her ovaries removed to try and preserve the tissue, or they can avoid the pain of surgery and simply give Alessia to option to use her mother's eggs. Regardless, Rodriguez is determined to give her child the best possible chance of becoming a mother if that is eventually what Alessia wants.

"If she never gets her period, then the one thing that I can do for her is this," says Rodriguez, adding that she is leaning towards opting Alessia out of the ovary removal. "[Chemo] does damage her egg reserve, but if I remove her ovary, then it's also whatever she has left. It's going to be cut down by half because we removed an ovary. So it's not an easy decision to make."

Rodriguez asks herself, "Is it an intervention that I want my child to go through on top of everything else?"

She spent some time wondering the same thing about the bone marrow transplant, despite its solid odds. There's still a "very high risk of death," says Rodriguez. "Is it higher or lower than living with sickle cell disease? I don't know."

The last six years have come in waves of difficult decisions and guilt, not just regarding Vida's existence but about Alessia's as well. If she had known it was possible to bring a child with sickle cell disease into the world — if she had known Dario was also a carrier — Rodriguez says she would've proceeded into parenthood with more caution.

"Not that I wouldn't have my child, but I wouldn't have just done it like this. I would've been more careful. I would've been more ready. I would've gone through the right processes to prevent this from happening to her," she tells PEOPLE. "Because as much as this hurts me, it hurts her more. And as much as I will be scarred for life with this, it will scar her more."

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In the lead-up to what will be a life-altering transplant, no matter the outcome, Rodriguez has dedicated herself to giving Alessia the best possible quality of life. When all the immunocompromised child wanted for her birthday was to go outside without a mask, the parents threw her party in their backyard. She ended up in the hospital, but they granted her wish.

Since the minute Alessia was born, Rodriguez has gone above and beyond to protect her childhood. "She's only getting one," the social worker notes. "And as hard as it's been, it's also been very beautiful."

She and Dario add magic wherever and whenever they can, whether they're celebrating Christmas or spending an average day at home. If Alessia believes in unicorns, her parents believe in unicorns, and they'll sprinkle glitter all over her room if it'll make her happy. Those are the childhood memories they want her to grow up with, not the hospital stays.

"I don't like to go over the top with things, but I do think that there are things for kids that make childhood magical," Rodriguez adds. "She likes being outside, and we have a big backyard. Okay, build a fairy garden and maybe the fairies will come every day and play with you."

Alessia knows she's going to lose her hair when the chemotherapy crushes her immune system, so Rodriguez helps her dye it rainbow colors.

"If she doesn't walk away from this, why would I have said no to dyeing her hair? Why would I say no to doing some of those fun things that she likes to do?" her mom reflects. "Do whatever the hell you want. It's hair."

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Even if the transplant happens without a hitch, the road ahead remains long, though not indefinitely. Alessia will need to be monitored for another six to 12 months with various appointments throughout. A friend of the family set up a GoFundMe page to help with their expenses, because Rodriguez is on leave from her work as a therapist, and her husband has already been in and out of his job for necessary isolation to protect Alessia from viruses.

A long-sought reward awaits Alessia on the other side of the risk. Rodriguez says her daughter can't wait to play in the snow "for hours, not for 15 minutes at a time." She can't wait to see a show on Broadway — the mother-daughter duo loves anything Lin-Manuel Miranda creates.

After she recovers, Alessia is going to enroll in a school outside of their family home. She'll learn in a classroom, surrounded by other healthy kids who share her love of dinosaurs and unicorns and reading books about bugs.

"She's very smart, loves art," Rodriguez says of Alessia, gesturing around the hallowed halls of the Met. "We come here a lot because she loves looking at art, and she loves walking around the museum."

Once Alessia is healed — and Dario goes back to finish his bachelor's degree and Rodriguez pursues a PhD or her third master's — the parents pray that her good memories outshine the bad as she looks back on the first six years of her life.

"I still want her to remember what it was like to be in this position, and I still want her to be grateful for the life that she will get to live. I want her to remember that she had beautiful people around her in the hospital," Rodriguez says.

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Rodriguez hopes to bring awareness to the moral conflicts, physical trials and medical trauma the entire family has experienced as well. Crucially, she doesn't want people to fall for those same misconceptions about what a sickle cell carrier looks like. Rodriguez believes in opening up reproductive care to give people with genetic disorders the best chance to have healthy kids through IVF.

"[Sickle cell] is a common disease. It's the most transmitted genetic disease. It's the most common genetic disease in the United States, and it's 100% preventable," she stresses.

She also dreams of writing a children's book about sickle cell disease. Rodriguez wishes she had an example to draw from as she and Dario walked alongside the illness and their daughter lived through it.

"It's hard as a parent to deal with this. It's hard as a child to go through this, but it's even harder when you don't have the tools to do your own research," says Rodriguez. Her book will thoroughly inform those affected by the disease, touching on all that happens before a child is born with sickle cell and extending all the way to finding — or conceiving — a bone marrow donor.

Maybe the book will be a tool for Rodriguez herself since she and Dario are adamant that they will be completely transparent with Vida when she's old enough to learn the reason she was born.

"I just think that it's something that she has the right to know, that she is doing this for her sister, and I hope that she understands why," says the Long Island mom. "That's my only hope, that she's able to understand why we had to make that decision and that she understands that it was a decision that was not taken lightly."

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In many lights, the guilt pales in comparison to what Rodriguez and Dario endured with Alessia in the two months after Vida arrived.

"I could not fathom losing either one of my kids. Losing Alessia or losing Vida — I'd rather be dead," she tells PEOPLE. "And coming so close to it last year, I think the pain would consume me. I would rather not exist than to lose one of my kids."

With luck, Vida will not remember much about having a sick sibling, meaning she also may never understand how hard this time has been for her parents. But Rodriguez's fierce dedication to her children won't wane with the transplant, and she hopes that speaks loud enough when she and Dario tell Vida the story of her life and the gifts she brought Alessia.

From day one, Vida's arrival offered something to validate every risk their family ever took: "It's hope," Rodriguez says. "Vida's name doesn't mean hope, but it means life because that's really what she's giving us. It's a new life."

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