Thank you for coming To read Luna’s story
We’re going to explain this in the least technical terms possible. That means we’ll oversimplify the complicated nature of her treatment, but if you ever need to geek out or dig deeper, please feel free to contact us and we’ll provide whatever knowledge or resources we have. We are going into detail here, so this is going to be a bit long, but we want expecting parents to get the most out of this and friends and family to have a place to get most of the story
Routine Ultrasound
Dunia (mom) was 21 weeks pregnant when she went in for a routine ultrasound. Up until then, everything had been going smoothly, and these visits were full of joy and excitement. We had a friendship with the technician performing the ultrasound that day, so it was easy to tell when her mood changed. Within minutes, our lives changed forever. She stepped out for a consult, then they came in and delivered the vague news that there was an issue with the development of the heart. She was immediately referred to a pediatric cardiologist. Renny (dad) was out of town at a conference but immediately flew home for the emergency appointment with Dr. Aldousany the following day, who confirmed there were some very serious issues with Luna’s heart. It was too early to tell just how bad it was, but that first echo (echo is short for echocardiogram—a heart-specific ultrasound), in utero, revealed a diagnosis of DORV and TGA. This meant that both her main arteries were on the right ventricle (Double Outlet Right Ventricle) and they were switched (Transposition of the Great Arteries). At this point, we were told that the transposition wasn’t a huge deal because the aorta could just be moved over and connected to the left ventricle, and she should be okay. Of course, this was a devastating, huge deal for us, but we were catapulted into a different world, and in the realm of congenital heart disease, it could be much worse. Again, we’re oversimplifying here, but in essence this could be solved with one open heart surgery soon after birth.
We quickly learned that CHD is usually a cluster of issues, and it seemed like every time we went back to the cardiologist for an echo, the diagnosis became more and more complicated. Dr. Aldousany was fervently positive about Luna’s ability to thrive despite the challenges she would face. That man has a poker face and an overall positivity that, to this day, affects how we process our challenges regarding Luna.
Early on, we knew Luna would need at least one open heart surgery within days of being born. It’s worth mentioning that while Dr. Aldousany was optimistic, other medical professionals were not. At this time in her story, it’s important to note that on several occasions, medical professionals cautiously reminded us of the legal timeline to terminate Luna in our home state of Florida and in alternative states where we could abort her later in the pregnancy. None of what we’re saying here is meant to judge any decision anyone makes. Luna’s story is one of positivity and hope, and despite what our beliefs may be, we don’t want her story associated with any negativity. This pregnancy, for us, was already a gift. Luna wasn’t born yet, and she had already impacted our lives with unimaginable joy from the day we knew she was coming. She was also teaching us about ourselves, our faith in God, and our resilience. Luna was helping us grow in ways we didn’t know we needed. We had no idea how long we would have her, but we didn’t care if it was for 5 minutes or 100 years—Luna had a purpose, and we were both terrified and elated that we had been chosen to usher in that purpose. Challenge accepted!
Let’s clarify something here. At this point, we are an ordinary, imperfect family with a teenager trying to run our businesses and manage the challenges of life like a game of dodgeball. There is nothing special about our ability to handle adversity. While we have our own individual ways of processing a higher power and our spiritualities, we are not a family rooted in any specific religious beliefs from which we can pull to help explain any of this. That said, we had both been on a journey for several years prior to this to repel a victim mentality and view everything—good and bad—as a blessing. By no means had we mastered this, but at no time did we ever feel like something bad was happening to us. There was a life inside of Dunia, and this was good. The complications that were coming were part of our story and something—the soul we had already named Luna—had to go through. There wasn’t a lot of discussion about how we would perceive this; we just both kind of saw it this way. Don’t get me wrong, there was plenty of fear and tons of tears, but the overall theme was gratitude, and we knew that no matter what happened in the future, we already had much to be grateful for.
The Diagnosis
By the time Luna was born, we pretty much had her full diagnosis: DORV, TGA, Hypoplastic Aorta, Hypoplastic Aortic Arch, Hypoplastic Left Heart Syndrome (HLHS). She also had a straddling mitral valve, an ASD, several VSDs, and stenosis of the pulmonary artery. Bottom line, her plumbing in and around the heart was a hot mess, but it could have been so much worse. “Hypoplastic” means underdeveloped. The most serious of these complications was the small left ventricle, which occurs in about 1 in 1,000 babies born in the US. We learned that hypoplastic left heart is a spectrum, and while Luna’s left ventricle was too small to be viable, at least it was there. We were told that, while rare, there was a chance she could, at the last minute, disproportionately grow her left ventricle before being born. This is important because most of her other issues could possibly be solved with a single open heart surgery and subsequent catheter procedures, but a nonviable left ventricle meant saving her would require a minimum of three surgeries over several years, with a compromised lifestyle and a strong possibility of needing a heart transplant in her 20s to 30s. This is called single ventricle palliation, which basically means they convert her into a person who functions with only the right ventricle-half a heart.
The three surgeries in the single ventricle palliation are called the Norwood, Glenn, and Fontan. These procedures are remarkable in that they reroute the flow of blood to give these kids a chance at life they would never otherwise have. If you’re reading this and your baby’s left ventricle is too small for other possibilities, there is ongoing stem cell research aimed at strengthening the right ventricle to better handle the burden. You may qualify for free cord blood and tissue banking. Nevertheless, this was not our case; we had a small window of hope in her little left ventricle but we did freeze her stem cells in case future interventions were developed they’d be more likely to succeed. Clic go to https://tinyurl.com/Cordblood4CHD for the company we used. We became obsessed with the possibility of disproportionately growing her left ventricle. While there are innovations and studies to try to do this in the fetal stage with a catheter, there was no option available for us to help Luna before she was born.
Before the Surgery
Dunia gave birth via what turned out to be a pretty complicated C-section, and within a few hours, Luna was transported to Nicklaus Children’s Hospital in Miami, FL. Dunia, fresh out of surgery and with high blood pressure, was considered high risk and would stay in the hospital for several days before being reunited with Luna prior to her first open heart surgery. Renny was in the ICU with Luna around the clock while a desperate Dunia did everything she could to prove to the doctors that she was ready for discharge in order to be with her baby.
Getting Luna strong for her surgery was a huge priority for us, so Dunia was keeping up her breast milk production while family members made frequent trips between hospitals with bottles in a cooler. We did everything we could to avoid Luna having to drink formula because NEC is a very real concern. NEC is an intestinal disease treated by stopping feeding and administering antibiotics. It is more prominent in infants with CHD and in premature babies. It’s important to note that the complexity of the CHD is directly related to the probability of developing NEC. Some studies show that with Luna’s complexity, the chances of getting NEC could be as high as 10%. While it can occur even with breastfeeding, it’s more common with babies on formula. Not having the baby with her made the production of breast milk much more difficult. You can imagine the guilt associated with that, all while dealing with postpartum hormone changes and C-section pain. There were times when we were running a few ounces of breast milk between hospitals to get just enough in before Luna’s next feed, which were two hours apart. Keep in mind that the main issue keeping Dunia admitted was her blood pressure, which she was trying to bring down while managing the responsibility of having to produce breast milk away from the baby, all while counting down the days to what is one of the most complicated surgeries performed on an infant. The nurses taking care of Dunia at South Miami Hospital were a godsend and made all the difference. These few days were agonizing. Renny was with the baby, experiencing the first bottle, the first diaper change, and the first bath, while praying that Dunia’s health would not take a turn for the worse. We figured out early on how to install a Fire Stick, which helped us stream music in our room. Renny was alone with Luna the first few days, and he had no idea how much time she had to live. Being a musician, he became obsessed with exposing her to as much music as possible. The nurses loved it. Luna’s room was the hang. We didn’t have synthesized baby Mozart playing, programmed through the hospital’s TV system. This room was a mix of Miles Davis, Earth, Wind & Fire, Bob Marley, and Beethoven being performed by the best orchestras in history. At any given time, you could walk in and hear Jacqueline du Pré performing the Elgar concerto or Trio Matamoros playing traditional Cuban music. Music therapy became a huge part of Luna’s life. Dunia would eventually be discharged and able to spend three full days with the baby before her first surgery. The agony of what was to come was overshadowed by the gratitude we had to share this time together. Luna’s smile when she heard her mom’s voice for the first time after being separated was priceless.
The Norwood
The first echo of our newborn baby Luna was performed by Dr. Stephen Girgis and revealed that she hadn’t grown her left ventricle to the point where it would be viable, so the three-surgery single ventricle palliation was the way to go. We looked at her perfect little chest, knowing that it would be the last time we’d see it without a scar. Luna had the Norwood surgery at one week old, performed by the surgeon—and real-life superhero—Dr. Redmond Burke. There is no feeling like being told your baby is on bypass. The thought that her little pumping heart, which we celebrated so much in that first ultrasound during the pregnancy, was not beating was unbearable. This surgery would address the reconstruction of her aortic arch and bypass the left ventricle, which is what the Norwood basically does, allowing oxygenated blood to reach the body. The DORV actually worked in her favor since moving the aorta to the right ventricle is part of the typical Norwood process. Of course, hers was already there. The Norwood is a very temporary solution, meant to last 4–6 months before she needs a second surgery, which is the Glenn.
After the Norwood, they left her chest open. Yes, our baby was there with clear tape covering her pumping heart in the event that something would go wrong and doctors needed to “go back in” right in the ICU room. Hours after her surgery, this is exactly what happened, and Dr. Burke and his team needed to go back in to control the bleeding. Nurses tending to dozens of machines and reacting to alarms, coupled with round-the-clock bloodwork, created a life-saving synergy that can best be described as a modern-day miracle facilitated by angels living amongst us. Nurses who handle these babies are exceptional human beings who hold a very special place in our hearts.
Thankfully, Luna had survived her Norwood with minor complications. Remember when they told you that if your O₂ was under around 93, you should go to the ER? Luna was living in the high 70s and low 80s on a good day. This is to be expected coming out of the Norwood and is temporary. It actually gets worse before it gets better because the Norwood requires the insertion of a plastic tube that does not grow with the baby. So, during those 4–6 months of life, as the baby grows, the O₂ levels will decrease, which is when the next surgery (Glenn) comes in to save the day. This waiting period is dangerous, and hospitals have developed protocols for checking in with parents, which has made a world of difference in babies surviving this period. The biggest threat is a clot in the shunt. This shunt is the only way the baby is receiving oxygenated blood to its body, and if it clots, things can get bad really fast. Monitor O₂ often and get to know your baby’s color.
Needless to say, we were ready to leave, but Luna wasn’t drinking enough from the bottle to stay hydrated. Most hospitals won’t let you leave with an NG tube because it can come out easily and needs to be reinserted quickly to avoid dehydration and malnourishment. The alternative is a G-tube (a port directly to the stomach), but that requires a small surgery and, while it can eventually be removed, it’s a bit more permanent. We were convinced she’d be drinking from a bottle soon and persuaded the team that we could be trained and would be able to handle NG tube replacement. This meant practicing on a doll and ultimately having to prove competence on Luna, which was nerve-wracking, but we learned to do it. In the hospital, they verify proper placement with an X-ray. We wouldn’t have that luxury at home, so we had to learn to listen for air with a stethoscope and know the difference between the NG being in her lungs or stomach. For obvious reasons, we were told to avoid letting her pull it out.
Of course, in less than a week of being home, Luna yanked her NG tube out. She thought it was hilarious—we were both there when it happened and just looked at each other and laughed with her. Without the safety net of a nearby nurse, our skills were put to the test—and we passed. We never stopped bottle feeding her despite the NG tube. While it was too little for nutritional purposes, we were doing this for practice. About a month and a half after we were home, we had trained Luna to drink formula thickened with cereal by thinning it very slowly, albeit still very thick. At one point, she pulled the NG tube out and we just never put it back in. We were 100% on the bottle. Most of what she was drinking was Neocate because breast milk supply was low, but we’d sneak some in, especially if she wasn’t tolerating her formula well or there was a chance she could be getting sick.
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