Olivia's Special Heart: Our HLHS Journey

       As promised, I have included the article I wrote below. Much to my surprise, I received a response from a local NOLA magazine the day after I sent it out. The editor is going to talk to the publisher about including it in an upcoming issue. Crazy!!! I also received a response today from Baby Lifetime. They wanted "our story" to include in their magazine. I do have to say, I am shocked that the response has been this quick and such a positive one.

   I am a firm believer that everything happens for a reason. We were blessed with Olivia, because we will all make a difference.

The Beat of a Broken Heart by Melanie Williams

                “Waaaa…” The sound of a newborn baby’s cry is something that a mother thinks about from the moment a pregnancy test turns positive. Even though this was my third time around, I was no different. The first cry for my baby girl was more than just a sign of new life, but also the start of a relentless battle for her little life.

                At 20 weeks pregnant, I went for a routine prenatal growth ultrasound. During that ultrasound, my husband and I were informed that our new addition had a congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS).  HLHS is a condition where the left ventricle of the heart does not form or is very small.   The mitral and aortic valves are too small or missing in some cases as well.  Imagine HLHS as having only half of a heart. Every diagnosis has varying degrees of complexity, but no matter what, each case is life threatening without medical interventions. After much research, we discovered that we were not alone in this fight. According to the CDC, (Center for Disease Control) 960 babies are born in the US each year that are affected by this disorder. Basically, about 1 out of every 4,344 babies born in 2012 will have to battle this same fight.

                Desperately trying to adjust to this news, my husband and I searched for answers. The answers we found were quite alarming. 1 in 100 babies are born each year with some sort of congenital heart defect. Some are diagnosed in early pregnancy by ultrasounds, but many are not.  With so many newborns affected each year, “why is there not more awareness,” I wondered? And so I began my mission towards CHD awareness, to make sure my daughter’s journey would be one that would make a difference.  This article, contacting politicians, reaching out to newly diagnosed moms, all are things I and other heart moms are doing. There is now even a CHD Awareness day in Louisiana. 

                Our heart warrior, Olivia Ann, arrived on November 1^st, 2011 at 5:15PM.   She looked great, but was quickly taken to the NICU for further evaluation. Olivia was moved to the nearby Children’s Hospital of Philadelphia (CHOP) shortly thereafter and her battle began 1,300 miles from our home in New Orleans, LA.

                Olivia underwent her first of three open heart surgeries, the Norwood, at 7 days old. To hand over your child to a complete stranger and trust that they will do all in their power to help her; was the hardest thing I have ever had to do as a mother. Yet, before I knew it, Olivia was in recovery; hooked to breathing machines, monitors, medications and wires coming from everywhere. My baby had turned into a science experiment. For every one step forward, she took 3 steps back those first few days, but she rallied in her own time and we were discharged at 22 days old.

                Olivia grew in the next few months and it was time for surgery number 2, the Glenn, at 4 ½ months old. The recovery was drastically quicker than the first time around, and we were home in 9 days. This was pretty remarkable, when thinking of all that comes with having an open heart surgery. 

                Since her birth, there have been times that have been critical in her battle. There have been ups and downs, and we are thankful for each and every one of them. The sad reality is that not all babies are as lucky as our sweet Olivia. Babies are not always diagnosed before birth and some often get sent home with parents who are unaware that anything is wrong. 

                As a new mom, you want information. You want to protect your baby from any harm, but do you know the right questions to ask?  Did you know that red light device a nurse puts on your finger is the same test that can save these babies?  Several congenital heart defects can be detected by this simple, painless procedure of checking the pulse oxygenation levels in the blood stream after 24 hours of life.  As you have experienced, this is an easy 2 minute test that can make a difference. It can save your baby’s life. Some other quick warning signs to memorize are dusky coloring, turning blue, trouble feeding, fast breathing, sweating along the forehead, and tiring easily. Any of these symptoms should be reported to your doctor immediately with a request for an examination.

                The sweet sound of Olivia’s coos with her toothy smile can light up any room. Our worst nightmares consist of her defect going undiagnosed, the hospital never testing her pulse oxygenation, or going home from the hospital thinking we had a perfectly healthy angel; only to find her blue and rushing to the E.R. for emergency surgery.  The best advice any heart mom could ever give you is this: request that your hospital test your baby’s pulse oxygenation.  As I wait for Olivia’s final open heart surgery at 3 years old, this is what I can do, help others and bring more awareness to the 1 out of every 100 babies born with a congenital heart defect.

References:

CDC. Facts about Hypoplastic Left Heart Syndrome. Retrieved 10/11/12.

                http://www.cdc.gov/ncbddd/heartdefects/HLHS.html