In my journey with Daniel, I have often felt invisible. It is unfathomable that the world continues to turn while our world revolves around the PICU. There are no promises in our world. No doctors can give us any guarantees. All we are given are opinions and choices, life-and-death options that we have to live with and sign for on a dotted line.
I am writing these warrior spotlights, in part, to show that I see you, heart warriors and warrior families. I see your struggle, and I see your fight. By sharing your stories, I am trying to honor your sacrifices and your lives in the only way I know how. Thank you so much for allowing me a little window into your lives.
Meet Emma. She is 5 months old. Emma has a severe case of Hypoplastic Left Heart Syndrome (HLHS). She has a very complex heart.
I connected with Emma’s mom, Valeria, through Facebook. We are both in a group for Heart Moms, and I responded to Valeria’s post. Through correspondence I realized that not only was she at Memorial Hermann, but her daughter Emma had the same nurse as Daniel each day for several weeks.
Nurses in the PICU have a 1-2 ratio, so one nurse will have two patients, depending on the severity of the patient’s case. For weeks, Daniel and Emma had the same nurse, yet we never met in person. When the nurse was in Daniel’s room, she would have to still be aware of her other patient’s vital signs. The other patient’s heart hate, oxygen saturation, and respiratory rates are visible in the bottom left of the monitor. That way the nurse would know if the other patient was in distress if she was ever in Daniel’s room. Daniel’s numbers were likewise visible in Emma’s room. When I would see those numbers, I would wonder about the other patient. Realizing on Facebook that I was talking to the mom of the baby who shared our nurse was surreal. I’ve gotten to know Valeria, and I feel compelled to share her baby’s story.
About 40% of babies with congenital heart defects are diagnosed in the womb, and baby Emma is one of them. Doctors appointments and ultrasounds are usually times of joy. Expectant mothers already feel bonded with their babies. By this time, mothers have spent months cradling their growing bellies, imagining the precious baby within, thinking of their baby’s future. What will she look like? Will she be a tomboy or a girly girl? What sports will she play?
And then in one moment all of that is turned upside down. In an instant, you stop imagining your baby’s future. Instead you fear there is no future for your baby.
When Valeria was four months pregnant, some routine blood work came back abnormal. She and her husband Daniel are from a small town six hours away from Houston called Eagle Pass. After she received the troubling results of her blood work, she was transferred to a specialty clinic where they ran multiple tests, including a diagnostic ultrasound. It was during this ultrasound that Valeria and Daniel got the news that their baby had a congenital heart defect. They were then transferred to Texas Children’s Hospital.
Because they lived so far away from the medical center, they had to move to Houston a month before her due date. They got an apartment eight minutes away from the hospital, and Valeria’s husband now works in Houston. For six months, they have been living SIX HOURS away from all of their family and friends. They have completely dedicated their lives to fighting for their baby girl’s future.
Emma was born full term at 5 pounds 5 ounces at Texas Children’s Hospital. Two months after she was born, TCH dealt a devastating blow to Valeria and Daniel. In their opinions, Emma was not a candidate for the surgeries needed to save Emma’s life. Their best hope was comfort care– stop the prostaglandins keeping Emma alive and say their last goodbyes to their sweet baby girl. If they went forward with the surgery, Emma would likely die on the operating table, doctors told them.
Valeria and Daniel didn’t accept this option. They felt like their baby could still fight, and they wanted to give her the chance to live. An accidentally sent email ended up changing their lives.
Daniel was sending emails to other hospitals asking for second opinions, and Dr. Salazar answered. Daniel wasn’t even intending to email Memorial Hermann, but somehow he accidentally sent it to the UT Health System. His response was the “light at the end of the tunnel.” By agreeing to take their daughter’s case, “our prayers were answered,” Valeria told me.
I’ve had many conversations with Dr. Salazar over the last six months. At one point I asked him, “what factors do you consider, as a surgeon, when you agree to operate on a baby with a heart defect?” He said he does things for children, not to children. There are so many advances being made every year, and he is on the front lines in the fight against CHD. “We don’t want to allow the preconceived ideas of the past to get in the way of a child’s future,” he told me. “Just because you’ve been told there is no hope, doesn’t mean there isn’t any.”
I asked Valeria what the most rewarding part of her journey has been with Emma. She responded, “bringing Emma home.” Four months after she was born, Emma finally got to leave the hospital for the first time.
I wish I could express to all of you how much it means to bring your baby home after being inpatient for a long time. For weeks and weeks and weeks, the hospital becomes your life. You forget who you are. You don’t remember what it was like to do normal things. You’re stuck away from home in this bizarre world of shift changes and rounds. You have to watch in helpless agony as your precious baby is poked and stuck. Every single day brings a new battle– with your baby’s health and with your sanity. For two parents who were told the best option for their baby was saying goodbye, every single moment is precious. The three weeks they had at home with Emma was priceless.
Emma’s fight is far from over. She is back at Memorial Hermann recovering from her second open heart surgery, the Glenn. She has overcome incredible odds in her short life. Valeria and Daniel have hope for their baby’s future. They continue to fight hard to give her a chance at life.
Please join me in praying for Valeria, Daniel, and Emma.
“‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong” (2 Corinthians 12:9-10)
“God is our refuge and strength, a very present help in trouble. Therefore we will not fear though the earth gives way, though the mountains be moved into the heart of the sea, though its waters roar and foam, though the mountains tremble at its swelling” (Psalm 46:1-3)
***Texas Children’s Hospital is an amazing hospital, and this post is not designed to suggest otherwise. All diagnostic tests– echocardiograms, X-rays, hearth Cath procedures– are subjective. There can be many opinions based on the information collected during these tests. It is always important to get a second opinion and weigh all options.***