Ruby’s Heart Defect: Reflecting on Difficult Days

I looked to my left, and in the darkest hours of the night I could just make out their faces. My husband, Aaron, so handsome and sleeping so soundly, with his head barely on his pillow. Scarlett, my almost-two-year-old little girl, whose face looked astoundingly similar to his, was lying between us, her little hands snuggled up by her neck. Both of them content, happy, loved, and peacefully dreaming away. Then I looked to my right and there was Ruby, my now four month-old baby girl. I watched the rise and fall of her chest, and stared at her face as she too was sleeping away.

Ruby's mom reflects on Ruby's past heart defect.
Ruby and her mom enjoy a quiet moment.

And I started to cry. Tears of joy streamed down my face as I realized that the three most important people in my life were literally within an arms length from me, something that hadn't happened in months.

One of the nurses during our eight-week-long stay in the hospital told me I would have “that moment” one day. I hoped that I would, prayed that I would, but I refused to get my hopes up. And here it was. My moment. Thinking about our journey brought back so many fresh memories, some joyful and some terrifying, but all of them had to happen to bring me to this.

First Glimmer of Heart Issue

I thought about that first night. Ruby was only six weeks old then. She had been acting a little lethargic and seemed like she wasn't feeling great. Scarlett had been fighting a head cold that week, so I thought that she had probably caught something from her big sis. But when Ruby vomited that night, something seemed wrong and I told Aaron we needed to take her to the emergency room.

When we got there, they thought she was just really dehydrated and that she would stay for a while to get some IV fluids. We had to be transported to the UC Davis Children's Hospital, because our local hospital didn't have a pediatric unit where she could stay. We were only there for a few hours when everything changed.

Ruby's mom and dad
Ruby’s mom and dad make a visit.

When the doctors came for their rounds, Ruby began struggling to breathe. It was like she was waiting for them to get there. Within a few minutes there were fifteen doctors and nurses in the room telling me that she was going to be intubated to help her breathe. I called Aaron to tell him to get to the hospital as quickly as he could and cried all alone at the nurse’s station. They wouldn't let me be near her until they were done, and I felt so utterly helpless. They took her upstairs to the pediatric intensive care unit and told me they were going to put some central lines in, so that they could get a lot of medicine to her quickly. I remember thinking “Why do you have to give her a lot of medicines? She is just a little dehydrated?” Nothing was making sense.

When Aaron arrived, they told us they thought there was something wrong with her heart, but they didn't know what. Again, I couldn't believe or even understand what they were talking about. She just had the flu. What were they talking about?

A doctor came and asked us to follow her to a private room. I knew then that something was really wrong. No good news comes in private rooms. She explained that something bad was happening with Ruby's heart and she was really sick. She stepped away for a minute and we heard people running in the hallway, tons of bells and buzzers going off, and we just waited in that little room. Me, Aaron and Scarlett, just waiting for news about our baby. Then the doctor came back and said something about “life support”.

Life support? Did she really say life support? She can't be talking about my baby. She then explained that Ruby's heart had a defect we didn't know about, and her heart was failing.

Life Support and CPR for Ruby’s Failing Heart

Because it hadn't been fixed in the first six weeks of her life, she was in multi system organ failure and the only way they could try to save her was to put her on the ECMO life support machine. It was a heart-lung bypass machine that was the highest form of life support. It would be the only way to keep her alive. She told us we had a choice if we wanted Ruby to go on the machine, and all I could think was, A choice? Really? We don't have choice at all. Put her on the damn machine.

Ruby on Christmas morning
Ruby on Christmas morning

Of course, we said yes immediately and listened as she explained the rest. All of the running and movement we heard earlier was because Ruby's heart had stopped and they had to give my precious baby CPR. She explained that the vomiting and lethargy was because her digestive system, kidneys, liver, lungs had all taken a hit and were minimally working, if at all. Her heart hadn't been working right for a while, and her organs didn't get the blood or oxygen needed. Nothing in the world could have prepared me for that. She had seemed perfectly fine for six weeks, and nothing indicated that there was something that serious happening.

Twelve hours after bringing her in for the flu, they put her on life support. When they took me back to see her, it was earth shattering to see my baby look like that. I was just so afraid for her and for myself. She was swollen to almost twice her small size because of all the fluids they had to give her, and there were wires and cords everywhere. I counted 17 different medicines being pumped in to different IV lines, and she had these two huge tubes in her neck that were literally taking all of the blood out of her body, oxygenating it, and putting it back in. She had a pool of blood under her head and neck that kept getting larger and larger. Her blood was being thinned and was leaking from holes in her neck where the tubes were, but they couldn't risk moving her at all, so she had to just sit there on a blood soaked bed.

Then all of the scary and almost ridiculous questions popped in to my head. Questions I'm sure any mom in my situation would think about: Am I ever going to get to hold her alive again? Why is her skin so cold? What do I tell her sister if she dies? If she dies, and people ask me how many kids I have, what do I say? 1? 2? Why didn't I know something was wrong?!

Happy, healthy Ruby
Happy, healthy Ruby


Heart Surgery for Our Baby

Surgery was four days later, and I remember it as the hardest day for me. When we said good-bye at the OR door, I genuinely didn't think I would get to see my baby again. I thought I was saying good-bye to her forever, and I didn't know how I was going to function without her. But my little fighter proved everyone wrong. She did so well in her surgery, and came back off of the life support machine. Things were still really shaky, but we just kept pulling for our little girl. She slowly started to get better, day by day, often with two steps forward and one step back.

So as I lay there in my bed now, weeping quietly to myself, I thought about what one of our nurses, Faith, had said during that first week. She told me that one day after all of the craziness was over, there would be a moment where I would realize that everything in my life was okay and everyone was where they were supposed to be.

That night was my moment. After eight weeks, open heart surgery, three other surgeries, countless medicines, dozens of blood transfusions, sleepless nights, days filled with tears, days filled with smiles, our Ruby girl got to come home. At first it was crazy and hectic and scary, and then about two weeks later that night came. I woke up in the middle of the night only to realize that everything that was important to me was happy, healthy, alive and together.

Ruby today
Our sweet girl today

As I closed my eyes to try to go back to sleep, a wave of gratefulness washed over me. For my family, for the journey that brought us here, and for being able to get to this moment. My moment.

-story by Ruby’s mom, Hayleigh Munoz