An Aunt's Perspective on Congenital Heart Defects

When I couldn't find myself able to write for CHD Awareness Week, I went where I always go--to my sister. She has been a rock for me over the last couple of years. I know if I need her, despite living 6 hours away, she is here for me. Always. No questions asked.  And she was here for me today.  Please read the Editor's perspective.  CHD doesn't just stike the child born with a broken heart. It doesn't just hurt the parents and siblings. CHD affects the entire family.

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I don’t remember M.O.L. first telling me about being pregnant with DQ or when she and the Mad Scientist found out that DQ was a girl (I know she called and told me these things, but I don’t remember). What I do remember is standing in my kitchen talking on my phone and hearing my big sis break down in tears because her baby was going to be born severely sick. I didn’t understand a word of what she told me; all I knew was that there was something majorly wrong with the unborn girl that we now know as the Dancing Queen. Since I live 6 hours away from M.O.L., I felt helpless. My big sis who had always been my protector throughout my life had just been given the biggest blow from which I could not protect her—her unborn child was sick—and I couldn’t even give her a hug. I realize now that even if I was in the same room as M.O.L. when she delivered the news, I would still feel helpless. I had no idea what this illness was; I had no idea what the future would hold; I had no idea how to help my sister.

Even though DQ’s birth was a planned cesarean, I was not there; instead, I had to wait for the call that she was born and then hopped on the road the first chance I got. The first time I met DQ, she was a couple of days old and in the NICU; only two people were allowed to visit at a time, and at least one of those people had to be either M.O.L. or the Mad Scientist. I went through the long scrubbing routine required before entering the NICU and slowly walked to the room, feeling scared out of my mind because I still didn’t know what to do or say. I saw my sis and went and gave her a hug. I saw DQ in the little plastic hospital crib with all the wires and leads on her little body. To be honest, at that point, it didn’t hit me how sick she was. My own baby, The Chef, had been hit hard and hospitalized with pneumonia for an 8-day stint when he was 2 months old, so the wires and leads didn’t seem all that terrible. I knew intellectually that she was very sick, but I didn’t really feel it. The first time DQ’s illness hit me a little was when she had her first heart surgery at 7 days old. I don’t think I was there during the surgery; I think I was watching TRex. I do remember seeing her (now in the PICU, where there were more nurses per bed) after the surgery—she was so small and had even more wires and a breathing tube. I didn’t like seeing her like that, but I also didn’t want to leave her. I had to head back home to get back to work, so I visited DQ one last time in the PICU. I really didn’t want to leave. I hated that I lived 6 hours away. What if I never got to see this little girl again? But DQ is a fighter; we saw that early on. I don’t know all the stats, but I do know that we could have lost her at many points.

As time went on, my family and I got to visit some weekends, so we started to learn a little bit about the everyday routine to care for DQ. I saw the tons of syringes that were filled with various medicines; I saw the ng tube that went through her nose down to her tummy to nourish her. Most importantly, though, I saw the beautiful smile of my niece, DQ. She’s always had a way to suck me in with that smile.

When the time came for DQ’s “full-fix” surgery, I took a week off of work to be there. I again felt helpless but figured that maybe by being there instead of 6 hours away, I could be of some use. I mostly watched TRex while M.O.L. and the Mad Scientist were at the hospital. Little Car Guy, The Chef, and I tried to keep TRex occupied and having fun since he was too little to understand why his mommy and daddy weren’t with him—well, that was my thought process; my boys just wanted to have fun with their cousin.

I’ve tried to get out there as much as possible when DQ has needed a procedure of some sort, including another full week with DQ’s third open-heart surgery. There are times, though, that all I could do was pray from home and be available via phone. When I’m stuck at home, I feel helpless, but when I’m there in my home state, I still feel helpless. To this day, I don’t know what to do or say because there’s nothing I can do or say to make it all better. I can pray, I can be on the other end of the phone and listen, and I can cherish every minute I do get to spend with DQ and the rest of my family. None of it is ever enough, though. I feel like a constant failure to my family because I can’t do enough to make anything better. I long to be back in my home state, and a lot of that longing is because I’m not able to take the time out to visit on a random weekend—I don’t get to spend enough time with DQ. M.O.L. doesn’t know this yet, but Car Guy and I just made the decision this week that we’ll be moving back to my home state over the coming months. It still won’t be enough to live closer by, but maybe I can take more of the burden off of M.O.L. and the Mad Scientist. I’ll never be able to remove it completely, though.

Throughout this journey, I’ve learned more about CHDs (nowhere near the amount of knowledge that M.O.L. has accumulated, but at least a little). The stat that still shocks me the most is that nearly twice as many children die each from CHDs as from ALL forms of childhood cancers combined; yet funding for pediatric cancer research is five times higher than funding for Congenital Heart Defects. Why is it that it took my niece being born with a severe CHD before I started to hear anything about CHDs? Why don’t other people know more? I see commercials and have coworkers constantly participating in walks and other fundraisers for one type of childhood cancer or another. I don’t want the work with pediatric cancer diminished, but I want more awareness of CHDs and more research money for CHDs. It may be selfish, but I want DQ to have every chance she can get because I’m not ready for her to be gone. I won’t be ready for that until I’m looking down from heaven and Miss DQ is the ripe old age of 80 or so. I also want her to be able to play with my kids and have fun like a normal kid without swelling and coughing because her heart can’t keep up. I want some new answers from researchers. I want to stop feeling helpless.