Our Heart Warrior

In Hong Kong on business at 35 weeks pregnant

In Hong Kong on business at 35 weeks pregnant

Brother Hugo meeting Ari for the first time hours after Ari was born.  June 17, 2014.

Brother Hugo meeting Ari for the first time hours after Ari was born. June 17, 2014.

Celebrating my birthday with Ari and Sergio. June 30, 2014.

Celebrating my birthday with Ari and Sergio. June 30, 2014.

Enjoying some nap time with my girl.  July 14, 2014.

Enjoying some nap time with my girl. July 14, 2014.

The First 6 Weeks

Ariana Garcia was born June 17, 2014, following a normal pregnancy and a magical delivery.  She is the second of our children, and arrived in a record 45 minutes.  From the beginning, we have observed that she does things on her terms.

For the first 6 weeks of Ari’s life, she was the picture of health.  Brother Hugo immediately took to his little sister and we were a happy family of four.  That being said, she did seem to have inherited the same allergies that plague both Sergio, my husband, and me.  Sometimes at night, she would become congested, and we would use a device to remove her boogers.  If that didn’t work, we would resort to Vick’s vapor rub for kids and a steamy shower.

On Saturday, July 26, 2014, Sergio and I had our first Date Night after Ari’s birth.  When we got home around midnight, both kids were tucked in and asleep.  However, early Sunday morning, she began having difficulty breathing.  Unlike prior nights, nothing we did seemed to help her.  She was clearly uncomfortable, and as dawn approached, her energy sapped, she went limp in my husband’s arms.

To the ER

I immediately jumped into a taxi, and Sergio stayed home with Hugo.  I remember hearing her with the cabdriver’s ears, her pitiful mewing sounds, and thinking how bad she sounded.  Still, I assumed it was something related to her allergies, at worst a deviated septum, and that we would be released from the hospital in time to walk home before it became too hot.   We wouldn’t take her home until over 2 months later.

The cabdriver dropped us off at a back entrance and I inadvertently bypassed the intake process and triage center, walking right into the ER.  The doctors looked at me quizzically, and not realizing my mistake, I told them that my daughter couldn’t breathe well, and could they please help.  The room got silent and as soon as they could hear her shallow, labored breathes, they ordered me to take her out of the carrier and put her on a gurney.

Ari’s tiny body was suddenly dwarfed by nearly 20 doctors.  One approached me, and began asking me questions about everything from my pregnancy to the last few hours.  They were phrased in such a way that that she presumed information that was incorrect, and I was immediately put on the defensive.  “She was premature, wasn’t she?” “She never breastfed, has she?” “She’s been throwing up during the night, isn’t that right?”

Frustrated, I told her that both her father and I have allergies, that she sometimes has problems breathing, and that last night her allergies were worse than normal.  The doctor scoffed at my deductive reasoning and said in response “your daughter is in grave danger”.

I felt myself getting hysterical, but tried to counterbalance it with the knowledge that the doctor might not have intended to invoke the fear that now filled my body.  “What are you saying?” I asked. “Could my daughter die?”  She just shrugged in response.

The Transfer

The doctors initially diagnosed Ari as septic, a serious blood infection that can be fatal.  However, after they continued to give her oxygen without any improvement in her oxygen level (her blood oxygen level fell as low as 30%, we would be told later), they determined that she had a heart condition.  We had taken her to the nearest pediatric ER, but the hospital did not specialize in pediatric cardiology, and so plans were made to move her to a nearby hospital with such a department, as soon as they felt she was stable enough to make the transfer across town.

Several more hours past, and though her condition had not improved, they felt that time was growing short and determined that they would have to risk it.  It was very clear to me that my beautiful, perfect baby daughter might not make it, and before they put her in the ambulance, I reached into the box in which she was encapsulated, harnessed all my love and determination and directed it at her.  I told her how much I loved her, how strong she was, how she needed to hold on, and that we would be together again very soon, all the while the tears that had begun hours earlier continued to stream down my face.

By this time, Sergio and Hugo had arrived to the hospital, and while Sergio rode with Ariana in a caravan of ambulances, Hugo and I made our way over to the pediatric cardiac specialty hospital, University Hospital 12 de Octubre.

We arrived before Ari and Sergio, and Hugo and I waited at the ER entrance.  As the ambulances pulled up, Sergio gave me a thumbs-up sign.  Ari had made it, though we would later learn that, had we arrived 15 minutes later, we would have been too late.

The Diagnosis

We were told it would take about 30 minutes to stabilize Ari and the doctors would be out shortly thereafter to tell us what exactly the issue was.  I sat in the window, phone battery dead, and directed all my thoughts and energy to the window behind which I thought that my little girl was fighting for her life.  Sergio tried to keep Hugo entertained, but as the afternoon wore on, Hugo became increasingly hungry, tired and stir-crazy- the trifecta of disaster as any parent knows.

Finally, after 3 hours and as Hugo neared an epic meltdown, Sergio went back into the ER, from which we had been forbidden. Two doctors followed him out and, as they saw Hugo, I heard one comment to the other “well, at least they will still have 1 child.”

My stomach dropped and my blood ran cold, and I was convinced that they were going to tell us that my precious baby had died.  I felt my heart close up, and I went numb, as I followed behind the doctors, preparing myself to hear those words.

We walked to a small conference room where about 10 doctors were standing around.  As we entered, one motioned for us to take a seat, as he also sat down.  He immediately began drawing a picture of a heart, and explaining to us that Ari had been born with a cardiopathy called “Transposition of the Great Arteries”.  He said that normally O2 enters the bloodstream from the lungs, and is then carried to the heart, where the oxygen-rich blood mixes with the oxygen-depleted blood that has arrived to the heart after circulating through the rest of the body.  In Ari’s case, The two main conduits, or arteries, into the heart that make that possible were flipped, or transposed.  The result was that the blood was not intermingling as it should, and there were effectively 2 parallel and separate tracks in which the O2-rich blood from her lungs continued to circulate through the heart, as the O2-poor blood circulated throughout the rest of her body.

All babies are born with something called a ductus, however, and it is essentially Mother Nature’s safety mechanism to ensure that the lungs have time to function properly for the first time after a baby is born.  It is effectively a hole inside the heart between 2 of the heart’s chambers that allows the blood to intermingle, creating a second way in which blood becomes oxygenated immediately after birth.  In most cases, however, the ductus  shrinks and ultimately closes after a few hours to a few days following birth.

Amazingly, this tiny hole kept Ari alive for nearly 6 weeks.  And not only that, she had not shown any of the tell-tale signs of oxygen deprivation (blue tinge in lips and extremities, lethargy, inability to breastfeed).  During the course of those 6 weeks, her ductus was shrinking, until finally it measured no more than 2 millimeters, which prompted the episode that resulted in our trip to the ER.

We would later learn that the doctor explaining all of this to us was Dr. Enrique Garcia, the man who would, in very short order, literally have our baby girl’s life in his hands.

8-10-14 Drawing7-27-14 Drawing

Drawings by Dr. Enrique Garcia from initial meeting in which Transposition of the Great Arteries was diagnosed.  July 27, 2014. Hospital 12 de Octubre, Madrid.

The Rashkind Procedure

Though the mood in the room was palpably grim, I was heartened by the fact that, first and foremost, Ari was still apparently alive, and also that her condition had been identified.  We immediately asked what the treatment options were. Dr. Garcia explained they needed to get oxygen into her blood immediately.  They would try a catheterization procedure (meaning that they utilize a vein in the groin that feeds directly into the heart and thus obviating the need for open-heart surgery), called a Rashkind.

Once Ari stabilized, they would perform an open-heart surgery known as an “arterial switch”.

We asked when the Rashkind would be performed, and Dr. Garcia looked up from his drawings, surprised.  “We started a few minutes ago,” he explained.  “There wasn’t enough time to tell you.”  His somber expression conveyed to me that his hopes that it would be successful and that Ari would make it were not high.

The doctors then left the room, giving Sergio and me time to absorb everything we had learned.  My husband, an eternal optimist, maintained that Ari would pull through.  I, however, am a realist, and I told him that we needed to be prepared for Dr. Garcia to come back into the room and tell us that our daughter had died.  That was the first time Sergio cried.

8 Weeks in PICU

Fortunately, I was wrong.  About 20 minutes later, Dr. Garcia returned, his demeanor visibly improved.  They had successfully performed the Rashkind, and her oxygen levels were now up to 75%, which is where they needed to remain until Dr. Garcia could perform the arterial switch.

Immediately following the Rashkind procedure. July 27, 2014.

Immediately following the Rashkind procedure. July 27, 2014.

We were allowed to go back into the Pediatric Intensive Care Unit (PICU) to see Ari.  For the first few seconds, I couldn’t make sense of what I was seeing.  She was completely naked, spread-eagle on a small platform, surrounded by more machines than I could count, each one hooked up to her body- through her nose, over her mouth, wrapped around her toe, stuck on her now-shaved head.  She was bloated, and completely motionless, eyes closed.  But she was alive, and that was all that mattered.

The next two months were a crash course in living in the moment, day-to-day.  For a few weeks, it didn’t seem like we could catch a break.  The day after we arrived, we were told that tests indicated she had suffered a brain seizure. It would turn out that in fact that she had lost the function of nearly a quarter of her frontal left lobe and there were “spots” throughout her brain that could worsen with surgery.

Then she destabilized a few days later, prompting Dr. Garcia to perform emergency open-heart surgery to surgically open up a pathway in her heart to ensure her O2 levels remained above 75%.

The day before she was scheduled to have surgery, another child arrived at the hospital who was determined to be in more critical condition than Ari.  While the vote of confidence in Ari’s improving health was encouraging, in the interim before she could receive her corrective surgery, Ari would go septic and it would be another month of touch-and-go, sleeping next to her crib or with the phone under my ear, should she destabilize again.

Her usual state of being during those 8 weeks in PICU- heavily sedated and on paralysis drugs.  12 de Octubre Hospital, Madrid.

Her usual state of being during those 8 weeks in PICU- heavily sedated and on paralysis drugs. 12 de Octubre Hospital, Madrid.

After Ari's first open-heart surgery.  July 31, 2014.  12 de Octubre Hospital, Madrid.

After Ari’s first open-heart surgery. July 31, 2014. 12 de Octubre Hospital, Madrid.

Due to some anti-coagulant medication Ari had to take to counteract some blood clots, she was in jeopardy of losing her 2 smallest toes on her right foot, turning them black.  Fortunately, she ultimately suffered minimal damage. 12 de Octubre Hospital, Madrid.

Due to some anti-coagulant medication Ari had to take to counteract some blood clots, she was in jeopardy of losing her 2 smallest toes on her right foot, turning them black. Fortunately, she ultimately suffered minimal damage. 12 de Octubre Hospital, Madrid.

Taking a selfie with our heart warrior. 12 de Octubre Hospital, Madrid.

Taking a selfie with our heart warrior. 12 de Octubre Hospital, Madrid.

In the end, the PICU ward would become our home for the next 2 months.  Every day and many nights I spent crouched over my precious baby, singing to her, massaging her with rosemary oil, stroking her hair, praying over her.  And for when I wasn’t there, I taped our sessions and played them on a loop, with the idea that she would never be aware of my absence or feel alone.

8-22-14 Drawing I 8-22-14 Drawing II

Dr. Garcia’s practice drawings in preparation for surgery.  August 27, 2014. 12 de Octubre Hospital, Madrid.

Now, with a little bit of perspective afforded by the passage of time, I know how lucky we are.  Against all odds, we got Ari to the hospital in the nick of time to save her. We happened on the doorstep of one of the most talented, experienced pediatric cardiothoracic surgeons in the world. Her care team overall was top-notch, and we were in a country that gave us access to their entire healthcare system, and never once did we hear a breath regarding costs, allowing us to focus all of our reserve energy into the infinitely more important task of recuperating our daughter. We lucked out in that her brain seizure occurred in a part of her brain that is more recoverable than others.  That her particular CCHD was relatively simple, and her overall health, good. We saw far more dire medical situations, and were witness to the overwhelming grief of two families who had to do what, prior to our entrance into this world, had been unimaginable- watch your baby take his last breath, and live every day that comes after it.

Holding my baby girl for the first time in over 6 weeks- a huge milestone. Sept. 8, 2014.  12 de Octubre Hospital, Madrid.

Holding my baby girl for the first time in over 6 weeks- a huge milestone. Sept. 8, 2014. 12 de Octubre Hospital, Madrid.

Leaving the hospital after nearly 8 weeks on "temporary release".  Sept. 19, 2014. 12 de Octubre Hospital, Madrid.

Leaving the hospital after nearly 8 weeks on “temporary release”. Sept. 19, 2014. 12 de Octubre Hospital, Madrid.

OpHeart is our way of paying our good fortunes forward, and the most sincere, heartfelt expression of our immense gratitude to not only our care team, but the medical community in total.  Our daughter’s future is promising, an outcome that I thought impossible in those first few weeks after that fateful trip to the hospital.  And we want to take our experience and use it for the benefit of other CCHD families.

Visiting Dr. Garcia for the first time since released.  October 10, 2014.  12 de Octubre Hospital, Madrid.

Visiting Dr. Garcia for the first time since released. October 10, 2014. 12 de Octubre Hospital, Madrid.

Our girl with her feeding tube and spirits intact.  October 14, 2014.  Madrid.

Our girl with her feeding tube and spirits intact. October 14, 2014. Madrid.