My Baby Has HLHS
The Beat of a Broken Heart
My first-hand account of my baby’s struggle for life
by Melanie Williams
“Surely, I can’t be pregnant!” My husband, Brett, and I had been trying for over a year and had given up all hope. Yet, while on vacation, I just didn’t feel right. Two weeks later, it was confirmed, baby number three was on its way. The dreams of what would be and the excitement of a new life began to flourish.
My pregnancy was progressing smoothly and finding out the sex was the next step. We filed into the ultrasound room and anxiously awaited the news. Much to our surprise and my son’s dislike, baby girl number two was on her way! We were overjoyed and ignored the fact that something just wasn’t right. The MFM doctor came in and told us a follow-up ultrasound would be needed just to make sure all was well. We left, with an appointment slip in hand, and quickly spread the news about our baby girl.
The day of my follow-up appointment, I rushed here and there, barely getting anywhere on time. I flew into the office late and welcomed the opportunity to sit and wait for a few moments. While catching my breath, my name was called. I froze. All was okay; it had to be. After about an hour, the doctor put down the probe.
“We have a lot to talk about. I don’t want to take away all hope, but your baby does not have a normal heart.” I became numb. I heard bits and pieces after that, but was not paying attention. The most difficult phone call I have ever had to make was the one to my husband. I blurted out the information and hung up. I started crying and couldn’t stop. My baby was broken.
The final diagnosis was Hypoplastic Left Heart Syndrome, HLHS. [See sidebar for information on HLHS.] My outlook on the situation was grim. I was devastated and depressed, blaming myself for doing something wrong. After the first 48 hours, I became angry and had to find someone who understood. My husband and I turned to the web and found many other families touched by HLHS. Some had great stories of survival; some offered accounts that were not so encouraging.
We were determined; we would fix our baby at all costs. We talked to the local hospitals. We visited, met the doctors and nurses, and ultimately did not feel at home. We then started looking into other centers across the nation. We found the Children’s Hospital of Philadelphia, CHOP. We called and talked to the fetal heart center coordinator, who was so sweet, and knew just what to say when we needed it. We flew up to visit a few weeks later and fell in love.
At 36 weeks, we drove the 1,300 miles to make Philly our home away from home at the Ronald McDonald House. At 39 weeks and a day into my pregnancy, my husband and I went to the hospital for delivery.
For the whole pregnancy, I dreaded this one moment. I was able, as long as my daughter was inside me, to protect her, to keep her healthy and to shelter her from the harsh reality that would be her beginning. Olivia Ann was born at 5:15 pm and the journey began. She was healthy, crying and absolutely beautiful. She was removed from my chest and taken to the NICU. Her doctors were phenomenal and stabilized her so she could grow, eat, and bond with her family.
At seven days old, Olivia was taken into her first open-heart surgery. It took three and a half hours from start to finish—the hardest, longest, most stressful hours of my life. I desperately wanted to hold her, to smell her, and to know she was safe. We received the news she was in recovery, and couldn’t get to her side fast enough. Yet, she was not the baby who left our arms just a short while before. She was now a science experiment. She had tubes, monitors, people, medications, and pumps everywhere. I couldn’t even look at her without tears in my eyes.
Since that surgery, Olivia has had three heart catheterizations and a second open heart surgery; she will need a third within the next few years. She is crawling, babbling, and keeping up with her siblings. She still has a long road ahead of her and will be monitored closely for some time. In the end, HLHS may have broken her heart, but to us she will always be perfectly imperfect.
Melanie Williams, a Labor and Delivery nurse at Ochsner Main Campus, is mom to Olivia, now 14 months old (on Jan. 1), Delilah (four), and Nathan (nine). Read more about Olivia’s journey at oliviasheart.org.
What is HLHS?
Hypoplastic Left Heart Syndrome (HLHS) is a birth defect that affects normal blood flow through the heart. As the baby develops during pregnancy, the left side of the heart—including the left ventricle, mitral valve, aortic arch—does not form correctly. The Centers for Disease Control and Prevention (CDC) estimates that each year in the U.S., about 960 babies—one out of every 4,344—is born with HLHS. Without surgical interventions, all cases of HLHS are fatal.
Congenital heart defects (CHD) statistics:
-Congenital heart defects are America’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.
-Congenital heart defects are the leading cause of all infant deaths in the U.S.
-More than 50 percent of all children born with congenital heart defects will require at least one invasive surgery in their lifetime.
-In the U.S., twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.
-There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
-A blood oxygen screening test, performed 24 to 48 hours after birth, can reduce the risk of an unidentified CHD from going unnoticed.
Facilities in New Orleans for Treating babies with HLHS:
Ochsner Pediatric Cardiothoracic Surgery
Dr. Dennis Mello, Chief, Pediatric and Adult Congenital Cardiothoracic Surgery
504.842.5200
Dr. Ivory Crittendon, Pediatric Cardiology
504.842.5200
Children’s Hospital of New Orleans
Dr. Robert Ascuitto, Director Cardiology
504.896.9751
Dr. Joseph Caspi, Director of Pediatric Cardiothoracic Surgery
504.896.3928