Denica's Caregiver Story

When you think of caregiver warriors, you think of someone who is brave, strong, and even calm, yet the truth is, for me I was fearful, powerless & worried to name a few! My name is Denica Hernandez, I am a past & present caregiver to my 3 beautiful daughters, 2 of whom were born with Hypertrophic Cardiomyopathy (HCM). Hypertrophic cardiomyopathy (HCM) is a disease in which the heart muscle becomes thickened (hypertrophied). The thickened heart muscle can make it harder for the heart to pump blood. 

It started in 2012 with our late daughter, Trinity, who was diagnosed at 2 months old. We took her in for her 2 months pediatric checkup and after examining Trinity, she felt she had a severe heart murmur. She referred us to a cardiologist in Lubbock. They did an EKG & prescribed a medication, and asked us to to follow up 2 weeks later to see if there was any changes.  There were not changes, so at that follow up, they sent us to the Emergency Room where we stayed for about a week & a half. They confirmed her HCM diagnosis and more medication was prescribed. We continued following up in Lubbock until her cardiologist told us transplant was in her future. He referred us to Houston where, at the time, we thought we were getting a foot in the door. However, Trinity was actually admitted and evaluated for transplant. We were sent home to New Mexico with a follow up appointment a month later. By the 3rd week or so, I noticed she was very lethargic, very puffy & swollen in her face, not eating & just looked miserable. Once again, we were told to take her to ER. We took her from Lovington to Lubbock.  She was in such severe heart failure they administered milrinone through IV and we were care flighted to Texas Children’s Hospital. My husband drove back to Lovington and then all night to Houston. Texas Children’s told us how quickly she was declining. The team there discussed her situation and it was decided that she needed the Berlin Heart Pump (a VAD pump for small children). This pump is only used on a few children because of the high risk of blood clots in the machine. This machine, however, saved her life and was a bridge for transplant. Her heart had become so weak and twice the size it was supposed to be resulting in a transplant in 2014. 

At the time all this was happening, I had no idea what the diagnosis meant or what it would bring to our lives. Going from a “normal” life to complete 180 by having to learn a new “normal” was and still is a challenge…especially after losing Trinity in 2016 from rejection of her heart transplant. We will always be extremely grateful to her donor & donors’ family that allowed us 2 extra years to together with Trinity. During those 2 years, I had to learn to administer important medications, maintain normal schedules, in addition to the newly added doctors & specialist appointments both locally in Houston (12 hours from our home in New Mexico). I was diligent to keep watch of any heart failure and rejection symptoms all while trying to keep a positive outlook.  

Five years later, I became pregnant with my youngest, Bailey. My pregnancy was listed as high risk due to Trinity’s condition. I am grateful for the extra support and monitoring during my pregnancy to help detect cardiomyopathy. I was followed by my fetal maternity specialist, and at 32 weeks, it was suspected that Bailey was to also have cardiomyopathy. My husband & I were both devastated by the news but knew we would care and love Bailey with all we have. It was decided early on that, if in fact, Bailey was born with cardiomyopathy, we would again travel the 12 hours to Houston for her care and then ultimately relocate there to be with the team that knew our history. 

Bailey was born in 2021 and our doctor immediately ordered an echocardiogram, which confirmed LVNC Cardiomyopathy. Left Ventricular Non-Compaction (LVNC) is a rare genetic condition in which the walls of the left ventricle are soft and spongy, rather than smooth and compacted as they should be. This makes it harder for the ventricle to contract effectively during a heartbeat and means that oxygenated blood isn’t easily pumped round the body. Having dealt with the disease before, I had a general idea of what was to come, I was more confident in myself to be able to handle the situation better and use all the information and resources available to really understand LVNC Cardiomyopathy. In our case we were able to have genetic testing with Bailey that resulted positive mutation of MYBPC3 gene. This is where more information came available to us for not only Bailey but our entire family. I felt overwhelmed by the information but now take everything I’ve learned to help move forward with dealing with this condition. 

My days are filled with caring for our two daughters, Jaylynn, age 15, and Bailey who is 2 ½ years old.  Both girls are doing well. Jaylynn is a carrier of the gene, therefore, must visit a cardiologist annually for preventive care and follow-up. This will continue for the rest of her life.  So far, she has had good reports. We are so thankful for that. Bailey is on medication to help her heart function and hopefully slow the progression of her heart failure. Bailey could possibly see a transplant in her future if her heart declines and no longer responds to the medications. Of course, I am extra watchful and mindful with Bailey after what we learned with Trinity. 

We currently live in Houston to be near the hospital and care for our family. My husband works out of town during the week and is home on weekends. This is tough to manage sometimes, but I am thankful to be able to be in here for our children as we are the best advocates for them. Some days are harder than others, but God is with me every step of the way. I want to share my family’s story in hopes that others will remember that you are not alone and things do get easier!