“‘There’s something wrong with my bloodwork,’ I sobbed to my husband. I was sitting in my car, alone, in a parking lot outside my work office in Selah, Washington. It was early October. I was 17 weeks pregnant and had just received the phone call from my obstetrician’s office. They were calling to request I come in to follow up on the lab work I had done the previous week — a test that screens for some common chromosomal and congenital abnormalities. The woman on the phone couldn’t say anything more; she wasn’t the doctor. She said only that I needed to speak with him and scheduled an appointment for the following day. It took me a whole 45 seconds to decide that wasn’t good enough. I called her back and said I would be coming in that afternoon. I needed to know.
Open neural tube defect: That’s what I was told it could be. I was sitting, alone again, with my doctor. My husband was in Montana visiting family. The doctor was explaining the results of the blood test. He asked if I had ever heard of a condition called Spina Bifida. I had… At least, I thought I had. I tried to remember. He asked if I knew what it meant. No, definitely not. He dove into an explanation. His voice sounded far away, but I struggled to engage and listen closely. I had to understand. Because, how could this have happened? The pregnancy had been smooth-sailing. Just a few days before we had celebrated our positive, second trimester ultrasound. We had found out we were having a little boy. We had decided to name him Malachi. And now? Now, I was being told Malachi may have this very serious condition — this disability?
‘But,’ my doctor tried to comfort me, pulling my thoughts back into the room, ‘these screenings only show a higher than average probability of the condition.’ There was still a 97 to 98 percent chance of a false positive, I was told. My family took comfort in those favorable odds. But, from that point on, I knew… I left the appointment that day with a referral to a high-risk pregnancy clinic and another ultrasound scheduled two weeks later. Then, we waited. We dwelled. We worried. My husband tried to stay positive: ‘After all,’ he said, ‘we don’t know anything for sure.’ But I did. And I wanted — needed — to prepare myself. So, I spent the next two weeks pouring over information, learning all I could about this mysterious, potential diagnosis. I became obsessive.
Another medical office — two weeks later: a genetic counselor sat in front of me. ‘At least this time, my husband and mom are with me,’ I thought. She told us our baby definitely had Spina Bifida, a congenital condition where the spine fails to develop in the typical way. It’s permanently disabling; a life-long condition. ‘He will struggle physically,’ we were told. ‘He will likely require a wheelchair.’ ‘He will probably never walk.’ Thankfully, all my research had prepared me for those predictions. ‘He also has hydrocephalus,’ she continued. That, I had guessed as well. (Thank you, internet, for the information you make available to people.) She explained to us that hydrocephalus is a dangerous accumulation of fluid on the brain. In Malachi’s case, it was the result of him having Spina Bifida. ‘Okay,’ was all I said. ‘Okay’ was all that ran through my head. What more do you say? But, my husband and mom cried. I thought, then, that maybe it would have been better to be here alone, after all, to save them the shock.
‘We must tell you the options available,’ the counselor continued. I went over them in my head. One: Continue the pregnancy and raise a child with a severe medical diagnosis. ‘Okay,’ I said. Two: Continue the pregnancy and place the child up for adoption. ‘Okay?’ Three: Terminate the pregnancy. ‘I understand,’ I said. ‘I understand my options.’ I felt Malachi twist inside my belly.
A children’s hospital is a place you would honestly rather avoid. You hope to go your whole life without ever having to step foot there. Yet, it is also the one place you most appreciate when you do find yourself in a situation like we did. I had always heard people praise Seattle Children’s Hospital. They said it was a ‘special place.’ One week after first hearing Malachi’s diagnosis, I had the chance to see for myself. We found ourselves in Seattle. The specialists wanted more information, better pictures and a plan in place for the remainder of the pregnancy. What we didn’t expect was yet another hit: congenital heart defects. Yup, in addition to the already daunting diagnoses of Spina Bifida and Hydrocephalus, we added two holes in the heart to Malachi’s complex medical picture. The plan was decided then, that Malachi would be born by planned cesarean at the University of Washington Medical Center in Seattle, would be transferred immediately to Seattle Children’s, and undergo surgery to close his spinal defect on his first day of life, followed by a second surgery the next day to place a ‘shunt’ in his brain — a device to help drain excess fluid. We would then return to Seattle several months later for surgery to repair his heart defects.
That was the plan; though, Malachi had one of his own making. On January 18th, 2018, I checked in at my local high-risk clinic, as I had twice each week for the past month. It was supposed to be for monitoring and a checkup. I sat in the chair, waiting, hooked up to the screens as a nurse tried again and again to find a heartbeat other than my own. After failing way too many times, I was brought into another room for an ultrasound; and then, another room with a video monitor. There was no doctor in the clinic that day, but I was told someone needed to speak with me. The smiling face of a familiar doctor from Seattle appeared on the screen. She told me, first, that Malachi was still okay, but he wasn’t moving like he should. ‘You’re having this baby tonight,’ she said. It was five weeks too soon. But, I just said: ‘Okay.’
I was told to walk across the street to the local hospital: ‘Take the elevator upstairs and tell them we sent you.’ It was a very short walk, but my mind raced. My palms were sweating. I texted my family on the way. ‘It’s time,’ I wrote. ‘I’m checking in now.’
The monitors wired to me proved I was in active labor, having contractions, but I didn’t feel anything. ‘Maybe everyone is acting so calm to keep me calm,’ I thought. Soon enough, though, I was being loaded onto a gurney and placed in the back of an ambulance. We drove to the small, local airport, and I was loaded into a transport plane. They were planning to fly me over the Cascades, in the middle of the winter, at night, to have this baby in Seattle. I knew I was in for a bumpy flight. I knew I needed to stay calm in that moment. I also knew that I HATE flying, more than anything else. But, that’s exactly where I found myself that night: Strapped to a very uncomfortable bed, my back aching, in a very loud plane, on a very turbulent ride to Seattle. I talked myself through my anxiety: ‘Focus.’
‘Name four things you can see; breathe.’
‘Name three things you can hear; breathe.’
‘Name two things you can feel; breathe.’
‘Name one thing you can smell; breathe.’
Over and over again.
We landed in Seattle, and I was rushed to the University of Washington. They had the operating room ready. It was cold. I was scared. The medication they gave me made me shake. Then, the meds didn’t work at all. They told me I would need to be put under anesthesia. ‘No,’ I protested. ‘I can’t be.’ I was afraid Malachi wouldn’t survive the birth, and I would miss seeing him, hearing his cry. I didn’t dare say that fear aloud. But, what choice did I have? ‘Okay.’ A mask went over my face, and I closed my eyes.
I opened my eyes into another room. My husband stood by the bed. ‘He’s fine,’ he said. ‘He took a little while to breathe, but then let out a big cry.’ The nursing team had taken him away to stabilize him and prepare him for transport. ‘They promised they would stop here so you can see him before he goes,’ he said, as if that could ever be enough time. But, that’s how I met my son for the first time. I held his little hand and stroked his little foot. Then… they wheeled him away.
I had to stay at my hospital recovering from surgery, and he had to go to his hospital to prepare for it. Nothing about it was fair. But, I face-timed him that night, before they took him back for his first surgery. My husband held the phone up to my sweet, little baby’s face. I did the same the following morning as they prepared him for brain surgery. On the third day, I was discharged, finally, and rushed over to see him. I wasn’t prepared for what it was like to walk into a NICU. It was wholly overwhelming: the constant beeping and alarming, breaking through an otherwise hushed atmosphere; the sterile environment, governed by hospital policies and procedures, over which a suffocating cloud of emotion still hangs — palpable anxiety, hope, fear and happiness, all mixed together.
Thus began our hospital life.
Malachi spent over 200 days at Seattle Children’s Hospital. It was the only home he knew for the first seven months of life. During that time, he bounced around rooms, floors, units. From the NICU to the medical floor and back again. In March, the cardiology team deemed him ‘Failure to Thrive,’ told us he was experiencing heart failure, and scheduled his heart surgery. Without the surgery, he couldn’t grow. He was retaining water and his heart was swelling. He struggled to breathe and was needing more and more oxygen support. They scheduled him for surgery on March 22nd; open heart surgery on a tiny baby — my tiny baby. I paced the surgical waiting room for hours, and then, he was back. We were told the surgery went well. It did, except, Malachi never fully recovered. His breathing was worse coming out of surgery than it was going in. He was never able to wean off the high-flow respiratory support and oxygen.
One day, when I was holding Malachi, sitting in a big hospital chair in the corner of his little hospital room, I watched as his face became this unforgettable shade of blue. He was trying to breathe, but he couldn’t get air in. He was clearly struggling. I pounded the ‘HELP’ button and nurses rushed in…. And so began the time we refer to now as ‘The Blue Period.’ It was discovered not long after that Malachi has a large tongue base that also happens to have a nasty habit of obstructing his airway. The ‘Blue Period,’ however, led to discussions about another procedure — to place a trach in Malachi’s airway that would allow him to breathe by avoiding any upper airway obstruction. The team all came to talk to us as Malachi’s blue episodes became more frequent. At that time, Malachi had just found his voice. He had begun vocalizing sounds, laughing. Through tears, during this discussion, I asked: ‘Will I ever hear his little voice again?’ But, what can you do when your baby can’t breathe? We knew it was the right decision. Something had to be done for him. ‘Okay,’ I said. ‘Let’s do it.’
Malachi had his trach placed on May 7th. The procedure went well. The recovery did not. As soon as the pain medication wore off, he crashed. Totally crashed. They couldn’t get enough drugs in his system to keep him comfortable. His little body was in shock. That first night, I crouched in the corner of the room, breathing through panicked breaths as I watched his oxygen levels yo-yo and his heart rate plummet with every slight move he made. My husband sat, slouched, on the bench in his room, head in his hands. Both of us, I believe, were mentally preparing ourselves to lose Malachi that night. But, we didn’t. He pulled through that night, and the next, and the weeks after that.
He fought off kidney infection, sepsis, and gastroenteritis all at once. He underwent another brain surgery to revise his shunt when the first one failed. He was poked, prodded, x-rayed, examined. And, all the while, my husband and I trained. We took a CPR class. We learned to operate Malachi’s ventilator. We learned how to revive him if he stopped breathing. We learned how to administer his medications, and so much more. Neither of us came from a medical background, but we had to take a crash course in how to keep our little, trach baby moving and breathing. We did it, but the weight of that reality still keeps me up at night.
On August 21st, Malachi was discharged from Seattle Children’s Hospital, and we set off on a new leg of our journey — this time, heading home.
Life with Malachi isn’t easy; even now that we are home. I feel like that’s a common misconception: that, once you’re finally discharged and home from the hospital, everything is hunky-dory. It’s not. Malachi requires 24-hour, eyes-on care. Every day, we prepare ourselves to face a medical emergency — we have, already, a few times since we’ve been home. Mostly, though, our lives are now filled with daily medical care, physical therapy, feeding therapy, sign language classes, and, still, endless checkups and clinics with Malachi’s exceedingly large (and still growing) team of providers and specialists.
But, there is no doubt that Malachi is thriving. He’s growing. He’s hitting milestones, albeit, on his own, special ‘Malachi Time.’ And, most importantly, he’s healthy.
That’s the story of Malachi’s birth and life in the hospital. And, it’s also the story of how I became a mom. Even before Malachi first opened his eyes into this world, he had already put more color in mine. Walking this path with Malachi has forever changed my view of the world and every aspect of it: from accessibility in schools, on playgrounds, and in public places; to health care policy, public transportation, and how our communities, roadways and sidewalks should be designed to promote equity and inclusion. He has changed my view on what it means to be a family. And, through it all, Malachi just smiles and laughs, because he already knows.”
This story was submitted to Love What Matters by Whitney Stohr of Yakima, Washington. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and subscribe to our best stories in our free newsletter here.
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