Someone once said, “In the end, it won’t matter how many times your heart has been broken because one day, someone will walk into your life and pick up every little piece and put it back together no matter how broken it may be.”
At 24 weeks pregnant, my doctor’s appointment started off as any typical ultrasound you get during your pregnancy. I’ll never forget when what seemed like a million people suddenly came in -- that was when I knew something was wrong. First it was a tech, then a student, followed by a resident and finally the doctor. My excitement and joy quickly turned to fear and trepidation as I anxiously looked at the ultrasound screen trying to see if I could see it – anything that would tell me what was going on with my baby. Finally, the doctor said he was pretty sure our sweet little girl has Hypoplastic Left Heart Syndrome (HLHS). I was doing all I could to hold myself together. I drove home to tell my husband the news (yes, I was alone) and wait for the hospital to call with the date of her fetal echocardiogram (echo).
As we met with the cardiologist at SSM Health Cardinal Glennon Children’s Hospital, we began to peel back the layers of medical terminology and what exactly this represented for Emily and our family. HLHS meant Emily would be born with half a heart. She would need at least 3 open heart surgeries in her first few years of life to repair the condition. Through these surgeries, the right ventricle becomes the main pumping chamber to the body. The later surgeries direct non-oxygenated blood to the lungs, bypassing the heart. These surgeries are not able to cure HLHS, but provide for a functioning heart.
As the news began to sink in, I was filled with so many emotions – stress, worry, and anxiety. Half a heart? What will this mean for Emily’s future? Will she be able to have a future? What do we do now? Can people survive with only half a heart?
When the initial shock wore off, I began to change my mindset. If my daughter was going to be born with half a heart, then as her mother I was determined to find anyone and anything to fill it whole with as much love as possible.
The next few months before delivery were filled with doctor’s appointments, tests, ultrasounds, fetal echos, and all the emotions that come with the fear of the unknown - all while trying to maintain a somewhat normal life at home for our then 15-month-old. The end of pregnancy was the hardest part. I just wanted Emily to be here, to get the process going, and to see what this was really going to be like. We were seen frequently by the SSM Health St. Louis Fetal Care Institute (FCI) at Cardinal Glennon – and that’s when we found the first missing piece to her heart.
The team made us feel comfortable and they loved Emily from day one. I remember one of our first meetings where our nurses and doctors literally held our hands. I held myself together during the appointment, but once Dr. Haynes left the room, I just lost it. I couldn’t hold myself together any longer. Our nurse Julie came in and said she would give us a minute. The next thing I knew, Dr. Haynes came bursting back through the door saying, “You’re supposed to do that in front of me.” She hugged us, held our hands and let us show our emotions. She supported us and empowered us to know we would make it through this,thanks to everyone at the FCI and Cardinal Glennon.
Prognosis before delivery was grim. Emily had a 50 percent chance of life after birth -- with intervention. Due to that prognosis it was determined that Emily would be delivered at Cardinal Glennon. Yes, Cardinal Glennon is a children’s hospital. No, they do not typically deliver babies, only in extreme cases about twice a year. The team felt it was necessary to be prepped and ready to take her to the Hybrid Cardiac Catherization Suite immediately upon arrival.
Emily entered the world on January 9, 2018. The morning of the C-section, all I prayed for was to hear her cry – a sign – anything to let me know that she was born alive and “healthy” enough to start the process of mending her heart. I knew there was a slim chance at getting to hold her. Emily entered the world at 8:18 a.m. She was 6 pounds, 13 ounces. And she was crying! I got to touch her little foot before they whisked her away. It was in that brief touch – a flash really - that I felt it. A love so electrifying and forceful that it could mend anything. I knew in that instant that my love for her as her mother was filling up her heart.
Just a few days later, Emily had her first open heart surgery, the Hybrid procedure. This is not the typical route for babies with HLHS but it was the safest option for Emily. Dr. Huddleston and Dr. Fiore operated on her heart and worked magic. I know that their skill, passion and drive are all sewn into Emily’s heart and another piece of her heart was filled. Thankfully, she handled it well and we were home 19 days after she was born!
For HLHS babies, the time in between surgeries is called interstage. This is a critical time for babies. Emily had weekly appointments with her cardiologist, Dr. Petersen. Her smile, warm hugs and constant reassurance was just more love added to Emily’s heart week by week. During this time, Emily had an echo at most appointments and chest x-rays when necessary. At home Emily was connected to her “pulse ox” machine to measure her oxygen levels in her blood and heart rate almost 24 hours a day. I lost a lot of sleep during this time due to checking her numbers all night or figuring out how to silence the alarms. Thankfully, Emily did well during this stage.
Emily’s second open heart surgery was just shy of her turning 4 months old. This surgery was the Comprehensive Stage 2 or “Glenn Surgery.” She was a rock star during the procedure and recovery. After this surgery we began to live a more normal life. We were able to take Emily out in public and do things together as a family. Seeing the love and bond grow between Emily and her sister was priceless. I know every secret they whispered to each other, every time they locked eyes and little giggles that came squealing out of their mouths filled more of Emily’s heart with love.
As a heart mom, the hardest part is always the anticipation and unknown. Emily still needs one more surgery in the next year on her heart. The anticipation of another surgery is always hanging over our heads. Will the surgery go well? Will Emily handle it well? How will recovery go? Thankfully, we have decided to enjoy every moment and take nothing for granted. This is one of the biggest blessings with congenital heart defects. It has taught us to live in the present and appreciate everything.
While getting a diagnosis such as HLHS is the scariest thing that’s happened to us, it has also been one of the best things, too. Her half a heart was made whole because of the nurses, doctors, surgeons, family members and our community that came together to pick up every piece of her broken heart and pour their love into her to raise her up in trying times.
Seeing Emily now as a funny, happy, 2-year-old is something we will never take for granted. Her half a heart has made ours more whole than we ever thought possible.
Watch this video to learn more about Emily’s story.
Lauren Simon is a mother to two beautiful girls. Her life changed forever when Emily received her diagnosis at 24 weeks. Cardinal Glennon instantly became a place of comfort and support. Going to the hospital feels like home. She can’t imagine receiving care for Emily anywhere else.
Every patient has a story. In Your Shoes: Walking the Journey Together takes us on the healing path of our patients as they write their story to help others who are just beginning.
