You are here

Juliana's story: Told by her military Dad

Images courtesy of Christopher & Riki Graves

Military life definitely has its ups and downs. I’ve been through many of these with my wife, Riki, while active in the Texas Army National Guard. Raising one child at home, our son, was a fairly simple task. Ben was born without an issue, but our second child, Juliana, was a very different story.

During Riki’s second pregnancy, I was working out of Brownwood and commuting 330 miles to and from Corpus Christi. Riki was diagnosed with breast cancer at the beginning of her pregnancy, and she soon began receiving treatment in Houston. During our local 20-week ultrasound appointment, our doctors identified an abnormality in our daughter’s heart. We were referred to a fetal cardiologist, who eventually diagnosed our baby with hypoplastic left heart syndrome (HLHS), a birth defect affecting normal blood flow to the heart.

We immediately reached out to Texas Children’s Fetal Center for a second opinion, as Riki was already seeing one of their maternal-fetal specialists during cancer treatment. Looking back, we hoped this second opinion meant the diagnosis was just a minor, soon-to-be-forgotten issue.  

I took Riki to Houston two days after our initial diagnosis to see Dr. Nancy Ayres at Texas Children’s Pavilion for Women. After a nearly three-hour appointment and over 200 pictures of the baby’s heart, we were once again given the worst possible news imaginable for expecting parents. Our daughter had a very sick heart, and we didn’t know if she would survive the pregnancy. In the military, we’re taught and expected to be as strong as possible, even in the most difficult and emotional situations. I quickly realized this minor issue we were hoping for had become anything but, and my inconvenient work commute directly conflicted with our monthly trips to Houston until Juliana’s arrival. 

Juliana was born via C-section at Texas Children’s Pavilion for Women on April 9, 2014. She immediately suffered from severe heart failure and was quickly rushed to the cardiovascular intensive care unit (CVICU). As a father, I knew I needed to be next to her. I held her hand that night in the CVICU and marveled at how strong her grip was on my fingers. I didn’t want to leave her alone, and seeing my child hurt this much was enough to make me cry all night while I remained by her side. I did more praying in that ICU than in any war zone.

After Juliana’s birth, we were told her heart couldn’t handle surgical repair. She simply couldn’t survive with her heart, and this was the most difficult thing to hear as a parent. We were broken at the thought of losing Juliana. I think the table of physicians sympathized with our devastation, as transplantation was mentioned as a distant opportunity.

The process for transplant approval didn’t take very long, but it was extensive. Juliana was quickly placed on the heart transplant list, and we had to pray that her broken little heart could hang on for a donor organ. Once we were in this spot, we knew we were staying with Juliana for as long as we had with her. This meant the military would place me on medical temporary duty. Essentially, we could be present to care for and love our daughter throughout her stay at Texas Children’s.

I don’t think we realized at the time just how much stress was alleviated by not having to worry about lodging or meals while Juliana was fighting for her life. Military life has always been a career that asks a lot of its soldiers, as well as their families, but the military is also a very compassionate organization that prioritizes family first.

Juliana held onto life in the CVICU just long enough to successfully receive a heart transplant. She was given a beautiful little heart, and it has been a perfect match for our precious girl. Once Juliana was able to recover for six weeks at Texas Children’s, the Army transferred us permanently to Houston. We’re proud to call Sugar Land and the Greater Houston area our home, and we’re forever indebted to the incredible physicians, clinicians and administrative employees at Texas Children’s Hospital. Our heart warrior has never ceased to amaze us, and she continues to visit Texas Children’s for check-ups and inpatient stays. Juliana is an incredible little girl, and she has a true warrior spirit.

The care provided to us by the military has been a real blessing. Once we became heart warrior parents, we understood how very few families receive the kind of benefits we’ve been afforded. Soldiers are asked to put their lives in danger without hesitation, but I never expected to be the most fearful when guarding my infant daughter’s life. We want to thank our donor family for giving us this life with Juliana, as well as her amazing care team at Texas Children’s for keeping her with us.

Related coverage:

Post by:

Christopher Graves, father of patient