My Baby Was Born With a Huge Hole in Her Heart -- But Our Fierce Girl Is a Warrior

Julia Oramas

Julia Oramas
Julia Oramas

I always knew our daughter was destined for greatness, but I never could have expected the challenges Emmi would need to overcome in order to become the healthy, beautiful, miraculous child she was created to be.

  • But first, let's bounce back to the beginning of our journey.

    Julia Oramas
    Julia Oramas

    After a year of marriage, Nick and I were eager to start a family of our own. We both come from incredibly loving and supportive families, and we were so excited to add a new blessing to the mix. Following the heartbreak of two early miscarriages, the unexpected positive pregnancy test brought tears, fears, and nervous giggles to both of us. We could feel it, this baby was here to stay! For the next 12 weeks, we kept our sweet little secret concealed while we moved across the country to Kansas City for Nick's job. I, like many women, found getting out of bed during the first trimester to be a feat worthy of an Olympic medal, so moving across the country during this time made me feel like I could accomplish anything. If I only knew then what I know now. This was the beginning of an uphill battle that would bring out levels of strength, faith, and love we didn't know existed.

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  • During our first prenatal appointment, everything was seemingly perfect.

    Julia Oramas
    Julia Oramas

    I will never forget hearing her heartbeat for the very first time. We had no idea her precious little heart was going to be the focus of our prayers, worries, tears, and research for the next year. During this first appointment, we were offered noninvasive genetic testing to screen for any abnormalities while also giving us a confirmation of the sex of the baby much sooner than the anatomy scan.

    After waiting two long weeks for the test results to come back, I made my way into my midwife's office, eager to learn whether the bows and tutus in my amazon cart would be purchased for our baby girl or replaced with dinosaur onesies and football decorations for our baby boy. As my midwife entered the room, I could feel there was a heaviness to her typically light demeanor. There is a sinking feeling when someone starts a sentence with, "So the good news is…"

  • In that moment, I knew this would be a very different conversation than I was expecting.

    Julia Oramas
    Julia Oramas

    My midwife delivered the news in the most delicate manner. Although our baby had tested negatively for so many scary disorders, she did screen positively for Down syndrome. As I processed this information and she watched my world crash around me, she held my hands and with tears in her eyes, told me over and over again what a blessing my child is. For the next bit of time, we discussed how my pregnancy would change now we had this information and she let me know I would be going to see a high-risk maternal-fetal medicine specialist get a closer look at our child. Only after listening to everything she had to say did I remember to ask if the baby was a boy or a girl. The moment she said "girl," I knew we were in for a fierce princess full of sass.

  • Somehow, I was able to hold myself together until I got to my car.

    Julia Oramas
    Julia Oramas

    I called Nick to tell him the news and he responded with surprising optimism and strength. I have always admired his ability to stand strong, no matter the storm. I, on the other hand, was falling apart. For an hour and a half, I sat in my car, crying in the parking lot. It was the most lonely I had ever felt as I mourned the loss of the child I thought I was carrying and adjusted to the reality our story was just going to be different. After almost two hours, I dried up my tears enough to be able to drive the 3 miles it would take to get back to my house, leaving behind the parking spot that would eventually become a sacred place for us in the future.

  • The next few months were incredibly lonesome as we processed the news eight hours away from family and friends.

    Julia Oramas
    Julia Oramas

    Looking back on that time, I feel so silly knowing how much grief we allowed ourselves to feel, but I also know this grief was a necessary and incredibly common part of the process of becoming a parent to a child with Down syndrome. I would be telling a lie if I said it was easy to work through those feelings. I know there are other parents going through this same silent struggle right now who need to know they are not alone and everything is going to be so beautiful in the end.

    Right about the time when Nick and I were really starting to embrace the fact Emmi was going to have Down syndrome, the 20-week anatomy scan turned our world upside down once again. Congenital heart defect. "Your daughter is going to need open-heart surgery," is a line no parent ever wants to hear. We were crushed. So, like any parent in our situation would do, we cried, we talked, we prayed, we researched, and we did everything in our power to set Emmi up with the very best team of medical professionals we could find.

    We spent the next several months going to countless appointments to monitor her in my belly until the doctors finally agreed it was time for her to join us. After two days of induction and 10 minutes of pushing, Emmi was welcomed into the world in the most beautiful delivery we could have imagined. She was perfect! Soon after her birth, she was taken to the NICU where she would spend the next four long weeks. 

  • Although we had wonderful nurses and therapists, only people who have experienced the NICU can understand the lasting trauma it causes.

    Julia Oramas
    Julia Oramas

    The typical heart is made up of four closed off chambers connected through valves and passages that all work in sync to oxygenate blood and distribute it to the rest of the body. Emmi's heart was much more of an "open floor concept" with a huge hole in the middle, allowing the oxygenated blood to mix with the deoxygenated blood, causing her lungs to work much harder and her body to be forced to function at a much lower oxygen saturation level than the typical person.

  • This pulmonary over circulation leads to what doctors call congestive heart failure, which she began exhibiting at just 4 days old.

    Julia Oramas
    Julia Oramas

    In order to keep her stable, we had to work through finding the right medication cocktails and nutrition methods. Emmi required a nasogastric (NG) feeding tube to receive nutrition as she did not have the energy to feed using the standard methods. She also had bouts of pure exhaustion where she would sleep for upwards of 23 hours at a time. As parents, we were terrified, but we trusted the team we put together and allowed our cardiologist to lead the way as we approached the inevitable -- open-heart surgery.

  • At 10 weeks old, most babies are spending their days eating, sleeping, pooping, cooing, and working on tummy time.

    Julia Oramas
    Julia Oramas

    When Emmi was 10 weeks old, we were traveling to St. Louis Children's Hospital and preparing to hand her over to the heart surgeon who would be delicately and intricately repairing Emmi's tiny heart. On the morning of her surgery, we were up before the sun, anxiously getting ready for the biggest day of our lives. We were absolutely terrified but knew we had an army of people praying for our daughter and her doctors. When it came time to let the nurses take her away, we were a mess. The medical team was focused on fixing Emmi's heart, but they didn't realize our girl took both of our hearts with her into that operating room. It was the longest day ever. 

  • After seven hours, we received the best update.

    Julia Oramas
    Julia Oramas

    Emmi's heart surgery was flawless and we were going to be reunited with our girl!

    We spent exactly one week in The Heart Center of St Louis Children's Hospital watching our child fight to recover and learn to embrace the new energy she was experiencing from her properly functioning heart. There were some incredibly tough times for all of us to keep Emmi stable enough to reach this point, and it became easier and easier for us to take deep breaths.

  • You see, as Emmi's heart was healing, so were ours.

    Julia Oramas
    Julia Oramas

    We began to see light when there had previously been darkness and despair. We got to watch our daughter dance to jazz music in her hospital crib just four days post-op. We had the privilege to see our daughter truly alive for the very first time in her short life. She is a miracle. Then, after seven days, we were sent home as a healthy happy family of three.

    Emmi is a warrior, created to be exceptional in all ways, eager to tackle challenges head-on, and capable of overcoming all adversity that may come her way.

  • Our daughter is a social butterfly, shining her contagious smile to everyone she meets.

    Julia Oramas
    Julia Oramas

    She loves getting to spend time with all of her friends and family. We joke and say Emmi has quite the fan club that is always standing by to cheer her on -- they are proudly named "Emmi's Entourage!" She is a beautifully happy child, with her fair share of sassiness and spunk. Right now, her favorite things to do are to eat, talk, roll, explore new places, meet new people, and accomplish new goals. Emmi is just like any other child, except she has just a little something extra that makes a lasting impression on everyone she meets.

  • Every now and again, we return to the infamous parking spot with our perfect miracle of a child and we giggle about how silly our previous fears were.

    Julia Oramas
    Julia Oramas

    Recently, we were even able to visit this special place with our midwife and discuss all of the accomplishments Emmi is already achieving. If given the choice, there is not a doubt in our mind we would choose Emmi exactly how she is. Her story is one that shows the unwavering strength and determination she will undoubtedly exhibit for the rest of her life.

    If you find yourself in a similar situation to ours, the only advice I want to give you is you deserve to give yourself the grace to feel all of your feelings. Then, when you feel ready, get excited about the beautiful journey that is about to unfold. You have no idea of the joy you will soon experience. Welcome to "The Lucky Few," a club that most do not choose to join but none would ever wish to leave. You have a tribe of supporters, including our family, waiting to welcome you with open arms and endless love.

    This essay was written by Julia Oramas and republished with permission.

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