Wednesday, September 20, 2006

I used to think that birth defects happened to other people. I had barely even heard of congenital heart defects, much less understood the effects it has on a family. If I had heard the statistic that said that congenital heart defects (CHD) are the most frequently occurring birth defect I would have still thought that it wouldn’t happen to one of my children. I entered the big scary world of congenital heart defects in November 2005.

With each of my three pregnancies I followed the rules – healthy diet, prenatal vitamins and lots of rest. My first two babies, both sons, were born healthy and strong. My third pregnancy was no different than the first two and I had no reason to suspect that anything would be wrong with the baby. It was my OB who first noticed anything was wrong. After the ultrasound she said that she saw something going on with the heart and wanted me to go see a specialist. Even though I was concerned I still didn’t truly believe that there would be anything really wrong with my baby. Things go wrong with other people not me, right? At least that is what I told myself.

What I found out at the specialist’s office changed my life forever. At least 8 out of 1000 babies are born with congenital heart defects and my baby girl was going to be one of those 8. I was told that there are currently at least 35 different types of heart defects and that my daughter has a very complex combination of defects. Her defect is very rare and unusual and has even proved to somewhat baffle her cardiologist.

Melia was born on January 26, 2006 with a single ventricle heart, tricuspid valve atresia, a common atrium, dextracardia (backwards heart), congenitally corrected transposition of the great arteries and pulmonary stenosis (a narrowing of the pulmonary artery). Being the eternal researcher I spent countless hours trying to understand congenital heart defects, my daughter’s heart and why it formed that way.

I learned that scientists do not know what causes congenital heart defects. I was shocked to learn that congenital heart defects is the leading cause of birth defect related deaths, killing more children than all forms childhood cancers combined. The sad thing is that congenital heart defects receive significantly less funding for research. This breaks my heart because while cancer is a horrible thing for a child to have, so is CHD. Any illness or disease that threatens a child’s life deserves to receive funding for research, especially one that takes so many young lives like CHD.

I have told you about my daughter’s heart defect, now let me tell you a little bit about my sweet baby girl. Melia has brought a certain joy to our family that we didn’t even know we were missing. Being the first girl after two boys, she is quite the princess! She gets lots of love, hugs and kisses every day. Her smiles just melt your heart and her eyes shine so brightly. I see such love in her pretty blue eyes when she looks at me. She loves to be held and cuddled. She likes playing in water and watching her brothers play. Just holding her brings a calming peace to your soul.

While I disliked seeing Melia go through her first of several planned heart surgeries and I am just terrified at the thought of possibly losing her, I know that God made her heart the way it is for a reason and that makes her perfect. My job as Melia’s mother is to take the very best care of her as I can. I feel that this includes helping to spread awareness about congenital heart defects. It is my hope that in the future there will be more funding available for congenital heart defects research. Perhaps one day not only will congenital heart defects be able to be detected in utero but maybe it will be possible to actually mend the defect before the baby is even born. Ideally the cause of congenital heart defects will one day be known and children could be spared a lifetime of doctor visits, procedures and surgeries and be able to live life to the fullest without any concerns of their hearts failing them.

Karen Haury

click here to view Melia's website

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