When I was 16 weeks pregnant, we learned two frightening things: In the short term, our infant daughter would undergo open heart surgery, and in the long term, statistics showed that her congenital heart defect would shorten her life.
It was during our early anatomy scan that we learned our baby girl’s heart wasn’t developing normally. The degree of the defect was uncertain and grew clearer as time went on. Hope had an endocardial cushion defect, commonly known as a complete AV canal defect, which meant that although she had developed all four chambers of her heart, she had a hole between her atria (ASD), a hole between her ventricles (VSD), and where she should have had two valves (tricuspid and mitral), she had just one that swept across her heart like a windshield wiper.
We worried about a whole host of other issues, including an aortic coarctation (imagine her aorta like a folded garden hose) and an underdeveloped left side of her heart, but with regular prenatal monitoring, my doctors (and Hope’s!) determined it would be safe to deliver at our preferred hospital without fear of needing to be transferred for immediate surgery. We had time.
And so we started our journey. New parents, c-section recovery, flooding hormones, NICU, a baby too tired to latch, and an estimation of surgery within 3 to 6 months. All of the instincts my husband and I had and all of the information we had gathered were being tossed away left and right as we reluctantly replaced what we thought we knew with critical medical instruction.
Hope’s first medication was Lasix, a common diuretic, which she started when she was about 3 weeks old. A week or two later she began digoxin, a medication meant to help her heart beat more efficiently. These medications, in addition to fortifying the breast milk I had pumped and was feeding her via bottle, were all meant to buy us time while Hope grew bigger and stronger for surgery.
But just 7 weeks into life, our cardiologist called the audible and told us he was getting us in to meet with the surgeon immediately. Hope wasn’t responding to the medications as well as anticipated and required her life-saving surgery sooner than later. So we met with Dr. Emile Bacha at NewYork-Presbyterian Morgan Stanley Children’s Hospital (a.k.a., CHONY) and agreed that he would be the one to open our daughter’s chest and give her an operational heart.
Surgery was scheduled for February 22, two days before Hope turned 2 months old, but pre-op testing was a disaster. It was suspected that Hope had inherited my bleeding disorder (von Willebrand disease), which postponed surgery until the test results were in and her hematologist could prescribe the precise dosage of medication to keep her from bleeding out during her operation.
If that weren’t enough, Hope went on to develop a 105°F fever. I will share details on that another time, but she ended up being hospitalized for 9 days before surgery. Those 9 days were torture, trying to determine what had gotten her so sick (eventual non-diagnosis of “fever of unknown origin”), bringing her back to stable, and then waiting tirelessly for someone to give us what we were simultaneously begging for and dreading: the operation.
That day came on March 9, 2016. Overnight feedings are nothing unique to a newborn until you’re in the hospital being told when your baby’s last milk bottle is allowed before surgery. She wasn’t scheduled to go in until the afternoon, so the entire rest of the morning she was only allowed Pedialyte, which satisfied her sucking urge but certainly not her tummy.
As we grew more and more anxious to be called down for surgery, which was compounded with the meeting with Hope’s anesthesiologist, our beloved roommates were preparing for their discharge. This family was our beacon of hope—a tiny baby girl can go through heart surgery and she can survive it and her parents can keep it together and they can go home together as a family. We had seen this precious little girl, just one week older than Hope, go through everything we were going to in the coming days: bandage removal, incision checks, blood testing, and the eventual fight to get the heck out of there and bring our baby girl home to a place where nobody would be allowed to cause her pain ever again.
The hospital doesn’t allow babies to be carried through its halls, so we were brought down to surgery with Hope in my arms as I was pushed in a wheelchair. We got to the end of a long, dank, nondescript hallway, and there before us was a bench with jumpsuits to put over our clothing. We slipped them on, zipped up, and were allowed through the doors to an area that was cold, sterile, and uninviting.
This part of my memory is still so foggy. Who wants to remember the moment they hand over their infant to a complete stranger for an hours-long procedure of which they are totally incapable of fully comprehending? Cardiology had become our hobby over the past several months—cardiothoracic surgery was a completely different ballgame. But I remember answering questions about her name and date of birth, signing papers allowing for blood transfusions, confirming the operation and the surgeon’s name, and accepting a charitably given teddy bear named Matthew.
Somehow in this sterile room Hope managed to doze off. We completed our paperwork and the nurse came in to retrieve our tiny baby. The nurse literally put her arms under mine, scooping Hope into a sweet embrace to keep her asleep, and I insisted on waking her up to say goodbye. How had I not said goodbye?? I had all these days, all these hours, consumed with the business of feeding and soothing and blood pressure readings and respiratory therapy and I hadn’t assured my angel that I would see her on the other side of this.
“It’s much better to bring her in sleeping,” the nurse told us. And before I had removed my hands from my watering eyes, they were gone.
At 7:54 PM, after about 6 hours and 45 minutes and a long walk along Riverside Drive (my first time outside in 9 days), our angel was brought up to “9 Tower,” the pediatric cardiac intensive care unit (PCICU). A team assembled around her frail and seemingly lifeless body to accept her onto the unit while my husband and I were instructed to keep our distance until given the green light to enter her room.
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Hope was full of drugs with blood crusted up and down her once pristine little torso. She had a chest tube draining blood and fluids from her chest cavity. The wires of her external pacemaker poked out of her like a science experiment. She was in wrist restraints that were safety pinned to the bed. She was nasally intubated with a feeding tube also stuffed up her little nostril.
Throughout the night and the days that followed until she was extubated to CPAP, Hope would regularly hold her breath. The nurse had to force air into her with a hand pump that stayed on her bed at all times. My milk hit an all-time low from the amount of stress pouring through my body when my baby needed it the most. My husband went on autopilot checking Hope’s IVs and alerting a nearby nurse when food or medicine was low, when the beeping that woke up our daughter didn’t seem to do the same for the staff keeping her alive.
Many of you lived through Hope’s operation with us last year. Some of you we met after. And still many more we know only by the serendipity of a shared photo on Twitter or a Google search hit. In any case, we are grateful for you, then and now.
To be continued…