My Daughter’s Open Heart Surgery

When my Raven was born she did not cry, even though it was via c-section and the umbilical cord was wrapped around her neck. She strained to open her eyes, gazing around the room with her hands cupped near her chin, quietly observing her new world. She would always be that way as she grew into a sweet, soft spoken little girl, who needed time to warm up to new situations, and would rather watch people than join them. She was always small, barely hitting the five percentile range at the doctor’s office and, while most happy when she was singing or dancing alone, she was painfully shy everywhere else. Everything, however, would change after she underwent heart surgery.

Raven had a loud heart murmur from day one and saw her first cardiologist before she was two weeks old. She was diagnosed with pulmonary stenosis, a condition that slowed the flow of blood from her heart to her lungs due to a thickening of her pulmonary valve and seemingly explained her murmur. While a bit worrisome, the defect was mild, requiring annual visits each summer, with a possibility of surgery in the future.

By age four Raven was my little sleeping beauty. Perpetually tired, slow, and sluggish, my little girl could only manage to find small bouts of energy throughout the day, but was constantly complaining about being tired, no matter how much she rested. During her annual appointment at Children’s Hospital in Seattle, her new cardiologist (her earlier one had retired) gave us some heavy, shocking news that would also explain her fatigue: the good news was that Raven’s pulmonary stenosis was now trivial at best and no longer a concern; the bad news was that a large hole was found on the backside of her heart via the routine sonogram. She had a condition called Atrial Septal Defect (ASD), in which part of the wall separating the upper chambers of the heart, called the atria, is missing, allowing oxygenated blood from the left atrium into the right atrium, mixing with oxygen-poor blood, and increasing the amount flowing to the lungs, which did not allow adequate oxygen to reach her other organs. It was concluded that Raven had had the condition since birth, resulting in her loud swishing murmur and, possibly, her low appetite and sleepiness.

The gap in the wall was big, but the surgeon wanted to try a minimally invasive surgery called cardiac catheterization, whereby a device would be guided through a vein in her groin up to her heart and secured on the wall. Our hope was that the hole was small enough to allow rims for the device to grab onto. If this young procedure (20 years) did not work or if the hole was too big, open heart surgery would be our only option to close it, a scary yet well documented highly invasive surgery with 50 years of success, but with the biggest risk out of the two surgeries of infection, blood loss, and death. I had a sinking feeling.

The day before Raven’s scheduled heart catheterization, she developed a high fever (103) and the surgery had to be rescheduled for September, five days before the first day of kindergarten. My seven year old son, Lucius, was distracted with second grade on the day his sister went to Seattle Children’s Hospital for what was supposed to be an overnight stay. After two hours of waiting to hear about Raven, the surgeon sat me down and gently explained what I had been fearing: Raven’s hole was nearly the size of her heart and a small camera that had been guided through a catheter in her vein and to her heart revealed no rims for the device to grab onto. She would need to have open heart surgery, which included bypass, where her heart would be drained of its blood and stopped while she was artificially kept alive, and a piece of her pericardium (sac that the heart sits in) was cut out and sewn over the hole in her heart. I knew that this was a necessary surgery that would give my daughter a better quality of life, but it was, nonetheless, a hard truth to swallow.

My sweet girl was required to lay flat for four hours after the minimally invasive surgery which only confirmed the need for an invasive surgery. She was exhausted, her mouth dry, and her tummy empty when I saw her next. She slowly nibbled on crackers and drank water from a straw while begging to go home or, at the very least, to sit up. I knew I would have to tell her later that the hole in her heart was too big and needed a bigger surgery to fix. As a parent who believes in being honest with her children, I needed to give myself a full day to come to terms with reality myself before delicately telling my five year old that we would be taking another trip back to Children’s Hospital.

One week later we were told that Raven’s surgery was scheduled for October 31st 2013, Halloween, and only four weeks away. In those weeks my husband and I talked openly with both our kids about the upcoming surgery nearly on a daily basis. My son knew more of the heavy details of surgery than my daughter, but she understand that her heart needed to be fixed so that her body would have more energy and she could grow strong and healthy; she knew that she would be asleep during the surgery and that afterwards would stay three to five days in the hospital with mommy by her side; she was aware that she would have a scar on her chest that would fade with each passing day; and, most importantly, she was given four weeks to get used to the idea before it happened. We celebrated Halloween on October 30th, trick-or-treating with a gaggle of other kids in the businesses of the Seattle Piers, and went to bed that night happy and ready for surgery.

I specifically requested an anti-anxiety pill to be given to Raven before being carried into surgery. We were given this option and grabbed at it since my five year had already been through a previous procedure only four weeks prior and had been so scared that she had to be held down by myself and three other doctors in order to administer the anesthesia. I wanted this experience, that would be scary for anyone, to be as pleasant as possible for my daughter. The medicine caused Raven to be calm and a little silly and, as I kissed her goodbye, she was happily carried away by a doctor, all the while informing him that she was here to fix her heart.

Stephen (my husband) and I were given updates every twenty minutes or so. The worst moment was when Raven was put on bypass. Knowing that my daughter’s heart was not beating and being cut into was almost unbearable. I tried to distract my nerves, but all I could do was clench my fists and remember to breathe, waiting for the next update. Twenty minutes later my husband’s cell phone rang and we were told that she was off bypass and her heart was beating. I was trembling with relief.

The ICU was meticulously sterile and everyone was required to Purell their hands before and after leaving Raven’s room, which I was grateful for since my biggest worry after surgery was infection. Raven looked particularly frail as she lay in the hospital bed, with three IV’s (including one that had to be sewn onto her neck), monitors, a fresh suture on her chest and a tube protruding from her abdomen that drained fluid from around her heart and into a bag. I remember thinking that as least the surgery; the hard part, was over.

Hours later Raven woke up screaming in pain and attempted to rip the tube sticking out of her abdomen out. I asked the nurse to do something about my daughter’s pain and she was quickly given morphine while I stroked her tear stained face and reassured her that everything was going to be alright. Our first and only night in the ICU was stressful, exhausting, and productive. Raven developed a slight fever for one hour, never to return. She was given x-ray’s, sonograms, and constantly had her vitals checked. We saw a nurse nearly every hour and, as her vitals progressed, she had two IVs removed, and was finally given something to eat. I did not get any sleep that first night, staying right by her bed in an uncomfortable chair, holding her hand and making sure that each time she woke up not in her bedroom, she felt me with her.

The next day Raven was given a full meal and moved out of the ICU and into a regular hospital room. Her catheter was removed and, for the first time since surgery, she walked on wobbly legs to the bathroom. Her recovery was fast and by the second night (!) she had been completely weaned off opiates and was simply taking Tylenol. After proving to herself that she could, in fact, walk, even with her drainage tube still trailing behind her, she insisted on walking everywhere. We walked the hallways, took a break, and she would eagerly but slowly walk to the play room a few floors and hallways away. She giggled when the nurse pushed her in a wheelchair to get her early morning X-rays and passed the time in bed by drawing pictures about bunny rabbits and butterflies and telling me stories about her new animal characters.

By the third day she had her complete appetite back and was suddenly craving milk. She also had her drainage tube removed and the hole in her abdomen sewn up, a painful ordeal that was made easier by the quick hands of the nurse practitioner. By that third and final night, Raven was so used to getting X-rays that she now posed for them, cracking the medical technicians up. Her final sonogram at Children’s Hospital revealed that the material taken from her heart’s sac was fitting in between her atrial valves just fine. Her heart was now without a defect and, to the delight of her cardiologist, her murmur was undetectable. Raven proudly informed all the nurses, doctors, and visitors that came to see her that her heart no longer went “whoosh, whoosh,” but now made a “bump, bump,” sound.

On the fourth morning of our stay at the hospital, having endured three nights and open heart surgery, my amazing five year old WALKED out of the hospital and got into the car like it was no thing!

Five days after leaving Children’s, Raven had her stitches removed from her abdomen (her chest wound was glued), revealing an air pocket where puss had gathered. The scar on her abdomen now looks like a beautiful tattooed belly button due to the infection.

Months following the surgery, Raven experienced bouts of depression, some nightmares, and a few bad headaches, but her chest never gave her problems. We decided to pull her out of kindergarten since she was a summer baby and give her the extra year to recover, emotionally more so than physically, and start kindergarten the next year, fresh and without open heart surgery getting in the way. After six months I was seeing some major changes: she had gained five pounds, her speech and drawings had improved dramatically, she no longer complained about being tired, and she had grown out of most of her clothes.

By the summer before kindergarten, my shy butterfly had blossomed into a sporty, high energized tiger that was assertive, demanding, and beaming with confidence. She had gained ten pounds since her surgery and shot up in height. Maybe surprising to some (but not to us), she talked openly about her heart surgery, about her experience at the hospital, and even about her scars in a positive light. For a now-six-year-old, she exemplifies bravery, resilience, and maturity. She had her chest cracked open, held apart, her heart drained, stopped, and cut into. She is not only my hero, she is a serious bad-ass who handled heart surgery like a boss and inspired the hell out of everyone around her! I hope to be more like my daughter when I grow up!