By Staci Geiger
I sat in the chair in the conference room, hands clasped, lips pursed.
The tension that radiated from my head and shoulders was almost palpable among the three of us. My husband, Brian, my mom, and I had driven four hours in the early morning for a fetal echocardiogram at The Fetal Center at Children’s Memorial Hermann Hospital.
Jittery from too much caffeine and too little sleep, terrified at learning the truth, we were praying for a miracle.
Now, the truth was upon us.
Learning the Truth
Four days before this moment, we had received our unborn son’s diagnosis on Good Friday at our 20-week ultrasound at our home hospital in Temple, Texas.
Imagine sitting in silence for 45 minutes while the sonographer is searching and searching and searching. Little did I know, she was searching for the other half of our son’s heart. The words “hypoplastic left heart syndrome” were bombs that ripped our world apart.
After Daniel’s initial diagnosis, I spent the next four days doing the absolute worst possible thing — searching online. I read horror stories. I read terrifying words like “terminal” and “comfort care.” Too many fears too unfathomable to name weighed heavily on my heart. In fact, I convinced myself that none of this was real. Maybe the baby was in a weird position during the ultrasound! Maybe they were wrong.
After our two-hour fetal echocardiogram at The Fetal Center, in which the cardiologist meticulously took picture after picture of our unborn son’s heart, any illusions that this was all some mistake went out the window, and I braced myself for the horrifying truth.
Then Dr. Vidhya Annavajjhala, a fetal cardiologist, walked in the conference room. Even though she is a very petite person, she exudes confidence and competence. From the moment I met her, I knew this was someone I could trust. She carefully explained our baby’s condition.
Daniel, our unborn son, had hypoplastic left heart syndrome (HLHS).
Finding an Answer to HLHS
Healthy hearts have four chambers — the right side pumps blood that needs oxygen to the lungs; the left side pumps blood with oxygen to the body. Daniel doesn’t have a left side. She explained the three step palliative process: Daniel would need the Norwood operation shortly after birth, then the Glenn at 4-6 months old, and finally the Fontan at around 3 years old. All of these operations re-plumb the heart so that blood flows directly to the lungs, bypassing the heart altogether. The newly oxygenated blood flows to the right side of the heart, which pumps it to the body.
It dawned on me: I have been praying for a miracle and here it is. The miracle of modern medicine, the incredible gift of a good life for my son.
Meeting the Team
At this same appointment at The Fetal Center, we met pediatric heart surgeon Dr. Jorge Salazar. I had done my research and I knew that Dr. Salazar was incredibly qualified and experienced, but the first words out of his mouth took me aback. “I have seven children of my own, so I know what it means to love and cherish your children. I treat every single baby I operate on like my own, and I will do everything in my power to give Daniel the best results possible.”
From that moment, I knew this was the man I trusted with my son’s life. Dr. Salazar and Dr. Annavajjhala were the first people on Daniel’s team, a team that fights for Daniel’s life every step of his journey.
Little did I know how much our team would grow.
Daniel, the Heart Warrior, is Born
Daniel is now 8 months old. We have been home three months and I am still in awe. All the resources, all the people, all the years and years of research, everything had to perfectly come together for Daniel to live.
Our heart warrior was born on July 14, 2018 at 34 weeks gestation. Being premature is serious all by itself, and much more so for a baby born with half a heart. I was so terrified during his birth. There were so many unknowns, so many questions with answers only God knows.
While I was giving birth, at least 20 people were in the room from several different teams.
There was the critical care OBGYN, several residents and fellows and medical students, the neonatal intensive care unit (NICU) team, transport nurses and labor and delivery nurses. Many women might have felt exposed or nervous around all of those people, but for me, it was incredible. I felt so blessed to know about Daniel’s condition ahead of time so that everyone was mobilized and ready to fight from his very first breath.
Beginning the Journey Home
When he was 6 days old, he had pulmonary banding surgery. I’ll never forget pediatric heart surgeon Dr. Ali Dodge-Khatami, one of Daniel’s surgeons, explaining that he would be placing little bands around Daniel’s tiny pulmonary arteries, blood vessels the size of a string, in order to give Daniel more time to grow and mature before the big surgery, the Norwood.
I felt humbled and awestruck realizing that this man faced life-and-death decisions every single day. All at once it hit me that tomorrow Daniel would be one of those decisions.
Before Daniel turned 5 months old, he had had five surgeries. Of his first 162 days of life, only 52 of them were spent at home. Dozens of wonderful, selfless nurses worked tirelessly to give Daniel amazing care.
After spending 110 days inpatient with Daniel, I feel like I know the pediatric intensive care unit (PICU) attending physicians, physician assistants, fellows, residents, cardiologists and respiratory therapists better than many of my friends. When I am sitting at home with all three of my children, watching Daniel roll over, chew on his fingers and laugh at his brother and sister, I think fondly of each of them.
This team of people, this incredible, well-oiled machine with so many moving parts, is our miracle.
For more information about The Fetal Center at Children’s Memorial Hermann Hospital, visit: http://childrens.memorialhermann.org/the-fetal-center/. For more information about Children’s Heart Center, visit: http://childrens.memorialhermann.org/heart/.