Several months ago, my husband’s cousin learned that there was a problem with her baby’s heart which was discovered by a trip to the ER for a fever. She’s here to share her story in the hopes that anyone else going through something similar wouldn’t feel so alone. If you or someone you know has experienced a pediatric heart defect or ventricular septal defect, we ask you to share with them to possibly shed light, positivity, and comfort.
Text and Photos by Angelica Monteverde and Tony Ferraro
Growing up, children normally have heroes that they can identify with and relate to like Spiderman or even Superman. For me, I was always attracted to a story line that involved the main character being the heroine of the story. I never identified with one main heroine, but they all shared similar characteristics which are strong, independent, and always able to overcome all the obstacles that got in her way. Some people never get to meet their hero, but I did, and I gave birth to my hero; my heart hero. Our story began on February 13, 2017, when my daughter, Lilyana, was only 4 months old. Coming home from work, we noticed that Lily had become irritable, weak, and limp so we immediately took her to the hospital, hoping to hear the news that her condition was minor. After the hospital ran some tests, it was confirmed that Lily had a UTI, which relieved our anxieties. We were sent home with medication to bring down the fever and to help Lily fight the infection. Two days later, we received a call from the hospital, asking us to come back because they found something in her X-rays. The hospital refused to give us any further information over the phone, so you can imagine the whole ride to the hospital was silent. It was silent because my husband and I were praying that the news we would receive was again something minor. When we arrived at the hospital, the doctors were concerned that her heart looked enlarged in her X-ray and wanted to repeat the procedure. The 2nd X-ray showed the same results as the first one – an enlarged heart and we were referred to a pediatric cardiologist. Our hearts sank because no parent wants to hear that there is something wrong with your child’s heart.
Now up until this point in our lives, my husband and I felt utterly alone. We felt alone because we had recently moved four hours away from our friends and family so that we could finish our residencies in Miami. We did not have a lot of people to turn to as we had recently started our residencies and we knew no one in the neighborhood. We shared our concerns with our closest family and asked for prayers that again, her condition is something minor. The day came to take Lilyana to her first appointment with the pediatric cardiologist. I was not physically present but was able to FaceTime throughout the visit. Then the moment came when we were told about her condition after multiple exams and procedures; Lilyana had a hole in heart, a large hole. Doctors call her condition Ventricular Septal Defect (VSD), a condition that is described as a hole located between the two lower ventricles of the heart. Her heart was enlarged because it was working twice as much as the normal heart. As the cardiologist described her condition and explained the different forms of treatment, I froze and I couldn’t speak. It felt like I was in a dream and inside I was screaming at myself to wake up from this nightmare. My world was falling apart and I could not breathe as tears rolled down my face. I left work early and by the time I got home, my husband broke the news to our families. All I could do was cry, hold my baby, and pray to God that what I was going through was just a dream. But reality hit our family again a week later when the pediatric cardiologist called us to let us know that after she had consulted with other pediatric cardiologists and a surgical cardiologist, Lilyana’s only treatment option was open heart surgery.
“Open heart surgery? On a baby? But she is so little!” So many thoughts ran through my mind from being positive to thinking about the worst-case scenario. By this time, Lilyana’s condition was known by not only our family but also our friends, but I did not have the heart to reach out to anyone. I began to isolate myself from everyone because Lily’s condition broke my heart and I was falling into a dark hole without knowing how to get myself out. As a mother, you begin to beat yourself up and blame yourself for your child’s condition. I would ask her doctors if it was something that I did or ate while I was pregnant with her. If it was at all possible, I would have switched places with her in a heartbeat, no questions asked. There was no way around this nightmare and we had to face it head on. It takes a lot of strength to help others, but it takes a lot more strength to ask for help. I had always been a strong woman, but this was something I could not carry on my own so I first asked God for support, strength, and mainly help for my family to get through this. We were overwhelmed (in a good way) with support, love, and prayers from not just our friends and families, but also our co-workers, old high school friends, and other people that were touched by our story. We even had the chance to speak to other families that had gone through what we went through. It’s an even greater support when you talk to families with similar situations because it gave us hope.
The day before her surgery, Lilyana was baptized in the Catholic faith. As a family, we united ourselves in our faith, but our anxiety and fears still lingered as we knew that as parents, we would have to give our daughter over to the hands of surgeons. The morning came when my husband and I had to take Lilyana to the hospital for her surgery. In the pre-op room, Lilyana was given a tiny pink hospital gown that would fit a teddy bear. As I looked at my daughter, I held back my tears as I wanted to be strong for her. Then the moment came when my husband and I had to hand her over to the surgeon. We hugged her, we kissed her, and we told her that we loved her so much, and that we would be waiting for her right here. The curtain closed and my husband and I just held each other, crying and praying. As we waited, our families distracted us with food, games, and stories and by the time we knew it, Lily’s surgery was over. Her surgery lasted only 2.5 hours and the surgeon was successful in closing her hole. Our families hugged and kissed one another because of the great news! As soon as she was rolled out of the surgery room, my husband and I were the first ones to greet her as I kissed her little forehead telling her that” mommy and daddy are here.”
Lily was hospitalized for about 5 days and her recovery was not initially easy as her heart was getting use to not having a hole. The day that she was discharged, Lily came home in a Harry Potter outfit, which we felt was suitable as she had just undergone a major battle and had a scar to prove it. Three months have gone by, as well as several follow up appointments, and Lily has been healing and growing beautifully. She is an entirely different baby; as if her real energetic self was hidden behind that hole in her heart. Some people tell us that we must have been strong parents to have to go through something so difficult. In reality, Lily IS the strong one in our little family. If it hadn’t been for our friends, family, and God, this would have been a harder road to travel. From this experience, we saw how strong our Lily-pad is and how resilient she is as she overcame this huge obstacle. We handed her over to God and the surgeons, and they gave us back our heroine. We wept and she fought, we questioned, and she proved, we prayed and she overcame, she is our heart warrior.
For more information on Ventricular Septal Defect visit the American Heart Association.