“What’s it like to be a parent?” My sister asked me that question not too long ago. I thought for a while and then said, “It’s as if every day, you simultaneously feel the most intense feelings of love and fear.” “Fear?” She asked, puzzled by my answer. “Yes. Fear. All of the sudden, you love something so much that the world becomes a scary place. There is no doubt that the thought of losing my child eclipses the fear of losing my own life.”
If you ask anyone with children, they will tell you that experiencing your child in pain, or in poor health, or in mortal danger is far more excruciating than experiencing any of that yourself. For me, the experience was no different in real life.
Monroe: 6 weeks old.
When my daughter was around 6 weeks old, she started projectile vomiting. After mistaking it for strong acid reflux, we went to the Emergency Department (ED) at our community hospital. Upon arrival, the head of the ED made time to see us. You see, I worked at this hospital at the time, and we knew each other quite well. He is a wonderful man, and a fabulous pediatrician, and that day was no different. He sat with us, held my hand, and spent what felt like an hour talking with us. “It could be one of three things: a virus, pyloric stenosis, or twisted intestine.” After explaining what each of these things meant (pyloric stenosis being when the bottom of the stomach closes up), he left us with the bottom line: “Both pyloric stenosis and twisted intestine would require surgery, but it’s very unlikely that she has either of these things. If either of those issues is the cause, however, I want you to know that we have a stellar surgeon that would come from Hopkins. And no matter what, we need to get Monroe an IV because she is dehydrated.”
It took the nursing staff 8 tries to get an IV started. This. Was. Torture. We had to hold her down while she screamed in pain and veins blew. Finally, a good friend of ours from high school, Tiffany, who was on shift as a nurse managed to convince someone from the NICU to come down to start the IV. Thanks to Tiffany’s advocacy, finally, success.
We did some tests, culminating with a scan that required her to drink contrast. Her daddy managed to get her to drink it, and when the test was complete, the radiologist turned to us and said, “Great news. It’s pyloric stenosis.” I immediately started to sob, and the poor radiologist started to back away, slowly and uncomfortably. You see, it was great news in his mind because compared to twisted intestine, this was a simple surgical fix, but what he failed to remember is that he was giving this news to parents of a 6 week old daughter, for whom any surgery at all is scary as hell.
The rest was a bit of a blur. We were moved to inpatient. Our friend Laura was also there with her son inpatient in the room next to us. Our three-year old son, Levi, was all set to stay with his Maw Maw for as long as necessary. Surgery was scheduled. The surgeon arrived from Johns Hopkins. He was a stoic man, with a military background, 6 kids, salt and pepper hair and an air of confidence and calm. We were told he was the best of the best. He stood in our room and answered our questions, telling us how routine this minimally invasive surgery is, and commenting on how surprised he was that Monroe had this issue considering that this normally happens with first-born sons and she is second-born and a girl. Before walking out to scrub in, he asked if we had any more questions. I said, “Will she be ok?” He smiled and said, “I am the best pediatric surgeon in the U.S. So, yes.”
I know what you are thinking: “Well, that was arrogant!” But, let’s be real. There was not a single, solitary other thing this surgeon could have said that would have made us feel better than that statement. We wanted the best. Period.
Surgery happened. All was fine. Recovery was a week in the hospital, filled with amazing nurses, visits from family, and other friends coming to the ED with their own sick kids. We were sent home with a clean bill of health. Or, so we thought.
Monroe: 9 weeks old
Two weeks later, I woke up to see my baby girl asleep in her bassinet next to my bed. She was fine sleeping on her own, but I was still freaked out and wanted her as close to me as possible. As I stroked her hair across her forehead, she started to stir. Then, I heard it. Slow at first, but then more intense. It was the sound of my baby gurgling. I quickly turned her on her side and her bile-filled vomit poured from her mouth. I texted at my husband, and said, “We’re going back to the ED now.” He responded, “Meet you there.”
I jumped in the car, thinking to myself, “It’s ok. If the pyloric stenosis has reoccurred, we can do another surgery. We can handle this.” We arrive to the ED. She’s deteriorating. I can tell by the hushed tones and the looks in the medical staff’s eyes that they are concerned. Husband arrives. Tests are done. IV is secured. It’s not pyloric stenosis but they find what looks like a “mass” and we are told we must take a helicopter to John’s Hopkins. Husband kisses us and scoots home to pack our hospital bag and get Levi situated again. He’ll meet me at Hopkins and I’ll ride in the helicopter with Monroe.
Waiting for the helicopter to arrive, I feel like I am having an out of body experience. A nurse appears from what seems like out of nowhere. As if she could read my mind (which was repeating, “only people who are dying are put in a helicopter,”) she takes my hand, and walks me toward the monitor. “Look,” she says, “She’s stable. Her IV is secure. She is getting fluids. See those numbers there? She’s stable. They are sending you in a helicopter because it’s the quickest way. It will be ok.” I nod. Stable. I repeat that over and over again in my head.
We’re in the helicopter, and a hook is dangling from above Monroe’s bed. She falls asleep while staring at it. I look out the window, my eyes cascading over the lush Maryland landscape on this gorgeous Spring day, wishing so hard that I could enjoy the view filled with bright green and bright blue. Stable, I tell myself. As if to convince myself, I think, “Nothing bad could happen on such a beautiful day.” Stable.
We touch down on the helipad and are rushed to the pediatric ED. More tests are done. So many doctors visit with us, I start to lose count. Residents are arguing with each other right in front of us about what they think the problem is, and what the best course of action is. I find comfort in this, actually, because it means they are paying attention to us and exploring every possible avenue. The head of my community Pediatric ED has been calling me once an hour, every hour, while on his vacation, to translate the medical jargon to real life for me. We are admitted. It’s midnight. At around 2 am, a doctor visits with us. The following morning, a nurse comes in with discharge papers and says that Monroe likely has a virus and we can go home.
We refuse to sign the papers, telling them that we aren’t leaving until they look at the scan from the other hospital where they said they “thought they saw a mass.” The nurse kindly obliges, telling me it’s our right, and leaves. Shortly thereafter, our same surgeon comes into our room and says that the head of radiology said she indeed saw something and scheduled a subsequent test. In that test, they found the mass, something they called a Meckels Diverticulum, a sac on the outside of her intestine, and she needed surgery.
Surgery was scheduled. Husband had to go back to work to log some hours since he exhausted his medical leave but would be back in time for the surgery. While he was gone, the surgery schedule opened up and they could take her immediately, so we rushed down. Husband tried to rush back but got stuck in traffic, and his work was more than an hour away without traffic. I kiss her cheek as they put her under anesthesia and then walk like a zombie down to the waiting area of the pediatric surgery department and take an empty seat.
I’m looking around the waiting area. I see a woman, crying on the phone, telling someone the story of how her child with a peanut allergy is in intensive care because a classmate threw up peanuts in class. I see a man, staring blankly out the window. I see a couple comforting their child as they mentally prepare him for his pending surgery. I see a pregnant woman pass out and be rushed out by a medical team. All of us, strangers, brought together by the commonality of all experiencing the worst and/or most frightening day of our lives. We nod at each other with somber furrowed brows, acknowledging the solidarity, but too afraid to speak and lose our armor. We must focus on solutions, because feeling the pure fear wash over us will be too much to bear. So, we sit in silence, together yet apart, and we wait, the lives of our children hanging in the balance.
I was told the surgery would be 30 minutes, 45 minutes maximum. An hour passes. Nothing. Two hours pass. Nothing. I start to panic. Then I see him – that salt and pepper hair, and stoic calm confidence enter the waiting area. As he starts to walk toward me, I dart upwards and hold my breath.
Seeing my panic, he says, “she is fine, please sit so I can explain.” They thought it was Meckels, but when they went in, they found nothing. So, he started to explore the inside of her intestines, and that’s when he found it: a spherical duplication cyst of the terminal ilium with gastric mucosa causing intermittent intussusception.
A what? If you think that sounds like Swahili, I would agree with you. The surgeon took my phone and wrote it in the Notes section for me because he knew I was likely retaining only 5% of the words coming out of his mouth. The gist of it, in layman’s terms, is that, in addition to her pyloric stenosis issue that he corrected, she created a second stomach in utero, which traveled down her small intestine, lodging in the furthest most spot (her terminal ilium). Due to the gastric lining of her cyst, it was not only burning a hole in the side of her intestine, but causing her intestines to collapse on itself, causing intense pain and vomiting.
They removed the cyst and some of her intestine and reattached it together. Then he took her appendix for good measure, saying it was a preventative measure and he was hopeful that he wouldn’t need to perform a third surgery in her lifetime.
The surgeon said he would write a research paper on it. He seemed excited. He said he had never seen this issue in a child in his entire career, and to pair it with pyloric stenosis? Absolutely unheard of. If I hadn’t worked with physicians, I wouldn’t have felt as happy about this as I did in that moment. I was ecstatic because I knew that it would mean he would be giving Monroe a ton of attention. She was an anomaly, and he had saved her life. Without the surgery, she could have died. His research paper would get him national accolades, and I hoped maybe her story would save others, too.
Before we were discharged, I walked the entire floor of the pediatric step-down unit. The whole week I was there, I hadn’t left her room until this moment except to take her to surgery. I saw a five-year-old girl who had been there for almost a year due to heart issues. I saw a baby being worn in a carrier by the nurses because he was born addicted and abandoned by his parents. I saw families praying. I saw nurses and doctors giving their all for these children in crisis. I felt filled with hope and hopeless at the same time. It’s a feeling so very hard to describe. The world is not fair, but we were going home with our now-healthy child. I was filled with such overwhelming gratitude that I hid in the bathroom and cried, and then cried harder because I felt guilty for feeling relieved when so many children here were still so sick, and even some might not get to go home at all. I realized it was my first time crying since I arrived at Hopkins, and I clearly needed it.
In the follow up visit two weeks later, we were told the cyst was benign. Huge relief. I also told the surgeon I loved him. The poor man shifted his weight and scratched his head, clearly not comfortable with my show of emotions. Then, I smiled and said, “and don’t take this the wrong way – but I hope I never have to see you again.” He laughed, and said “Fair enough! I’ll try not to take that personally,” with a wink. We hugged and I went on my way.
In times of crisis, we are told to “look for the helpers.” In our time of crisis, the long list of our helpers brings me to my knees: Our pediatrician, the head of the pediatric ED, Tiffany, the NICU IV starting nurse, our friends who also had kids in the hospital, Maw Maw, Cece, my lifeline of besties, our wonderful family, our Hopkins surgeon, the radiology tech who found the mass, the radiologist at Hopkins who ordered the Meckels scan, the coordinator at the community hospital who told the head of pediatric ED to call me while we were at Hopkins, the nurse who told me she was stable, the helicopter team, the Hopkins nurses, the Hopkins residents, and the countless others who were a part of Monroe’s life-saving team.
The word gratitude simply doesn’t cover it.
I can see the helipad of the community hospital from the parking lot of my firm’s office building. Every once in a while, when I am headed to the car, I see a helicopter touch down. I take a deep breath, and send a prayer up for the person being transported. I solemnly nod in solidarity to the parents of whoever that patient is in the helicopter, and also to those people I am forever connected to from that waiting room. While I hope to never have to sit there again, I know realistically that the world isn’t perfect, and nothing is guaranteed.
As I said, being a parent is experiencing the most intense love and the most intense fear simultaneously every day. Loving our kids so very much also means that we open ourselves up to the greatest heartache. But you know what? It’s so worth it.