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Katherine’s Story: The Land of In Between

April 30th, 2022  | HIElights of Hope

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Name: Katherine Howard

Location: Virginia, United States

Child’s Birth Year: 2018

Keywords: Communication Challenges, Self-Care

Katherine lives with her husband, Caleb, and their two children, Caroline and Cohen, in coastal Virginia. Caroline is five years old, while Cohen, Katherine’s son with HIE, is three. Up until Cohen was born, there was no indication that he would be anything but perfectly healthy. Yet, with his birth in September 2018, the unanticipated came to life.

A week after Katherine’s due date, Cohen still was hanging on inside of her. Katherine went for a check-up, ready to finally not be pregnant anymore and to meet her baby. After the doctor told her she would need to wait three more days, Katherine went into panic mode. Hurricane Florence was quickly approaching, and the city in which Katherine lives was under mandatory evacuation the very next day. She was terrified that, if she waited, she would be having her baby in the midst of floods, downed trees, and major power outages…how could she care for, let alone deliver, a newborn in such potential peril?

Soon after her appointment, Katherine returned home. While doing hurricane prep, her water broke. She let out a huge sigh of relief that at least this baby would be out before the incoming hurricane ravaged the area.

When she arrived at the hospital two hours later, Katherine was told she was in labor, already 3.5 cm dilated. She was taken to a labor and delivery room, informed that the OB who had followed her throughout her pregnancy was off work that day. Panic set in again, but Katherine told the nurse that the OB wanted to be called in, even if he was off. The nurse said it was still too early but that they would call once labor was further along.

Katherine originally didn’t want any pain medicine or an epidural, but natural labor proved to be more painful than she expected. Caleb insisted that she allow the nurse to give her something, since, after a certain point, she would no longer be able to receive any sort of relief. After receiving medication to manage her pain, Katherine could tell that the dosage had been too much. She felt she was in a weird, drunk-like state. It felt as though the world around her was spinning, and she vomited into her pillow due to the sensation. She could barely form coherent words by this time. To make matters worse, none of the nurses checked in to see how far along Katherine was in her labor. Eventually, Katherine muttered that she had to push to the bedside nurse. The nurse appeared shocked that Katherine could possibly be so far along in her labor after a mere five hours in the hospital. Reluctantly, the nurse checked and realized the baby really was coming. In the midst of so much chaos, Katherine was grateful to hear at least that her OB was on the way to deliver Cohen.

As the OB arrived in the room, he confirmed that Cohen was on his way out. During the delivery, the OB noticed that the cord was wrapped around Cohen’s neck. He told them that, unfortunately, Caleb wouldn’t be able to cut the cord this time around. Their daughter, Caroline, had also had the cord wrapped around her neck at birth, and because she only had to be under observation for a few hours, Katherine and Caleb assumed that Cohen would follow suit.

Katherine and Caleb still didn’t know the sex of the baby, and when they finally found out it was a boy, Caleb hugged Katherine, exclaiming in delight, “Oh my gosh, it’s a boy, Kat! It’s a boy!” But Katherine was in so much pain that, upon briefly glancing at Cohen—noticing how pale, still, and sickly he looked—she passed out. Her last thought before she lost consciousness was that something had gone terribly wrong.

Katherine woke up soon after, and instantaneously, all that fear came flooding back. She remembered that Cohen hadn’t let out a single noise. She began crying, begging, and screaming for somebody to tell her what was wrong. “Is he dead? Did he die?” she cried. Neither the doctor nor her husband would answer her, too scared to say for certain. Katherine heard nurses in the background using medical terminology she had only heard in TV dramas. And then, after a while, she finally heard the sound of Cohen crying. Katherine felt a wave of relief, thinking that, because he had cried, that meant he was okay.

Cohen was quickly taken to the NICU for further evaluation. Not thinking much of it, since Caroline had gone to the NICU, too, Katherine texted her mom to let her know about the birth and asked her to bring Chick-fil-A to the hospital for dinner. As they sat and enjoyed their food, no one addressed the huge elephant in the room—what in the world was going on with Cohen?

Eventually, the head NICU nurse came in, and told Katherine and Caleb that Cohen was really sick. She brought up the option of transferring Cohen to a different hospital, where he would be able to receive better care. Even though they didn’t fully understand what they were signing up for, Katherine and Caleb immediately agreed, willing to try anything that might help their son. An ambulance soon came to take Cohen to the new hospital in Richmond, where he was to undergo therapeutic hypothermia cooling. Caleb followed behind the ambulance so Cohen wouldn’t be alone, but Katherine was unable to be released from the hospital right away.

The following morning, the day of the mandatory evacuation for Katherine’s city, she left the hospital with no baby in hand. She and her mom rushed to their homes to prepare for the imminent hurricane, packing anything they might need for the foreseeable future. By the time Katherine arrived at the NICU, Cohen had been cooling for well over twelve hours. During those NICU days, Katherine operated on autopilot, going through the motions, but feeling too overwhelmed to fully process everything going on. She stayed in a nearby guest house, where families of patients could stay for free or make donations if they had the means. It was convenient to be so close by, but still, the walk back and forth from the guest house to the NICU was a mile-long round trip—a physically taxing distance for Katherine after just delivering a baby. This, on top of the mental trauma of seeing Cohen hooked up to so many tubes and wires and laying on an almost-freezing bed for days, took its toll on Katherine’s health. Her blood pressure skyrocketed, and it was then that she knew she had to pick and choose the time she spent by Cohen’s side. She had to learn not to punish herself for being unable to be there 24/7, for HIE parents need rest too.

It was hard for Katherine to wrap her mind around this new life with HIE. Cohen was now somewhere in between the land of the living and the land of the dead—a gray zone of sorts. During this period, no one took the time to break down everything that had happened to Cohen. After Katherine eventually asked a nurse what happened to him, she received a one-page print-out, with a generic overview of HIE, and a list of potential subsequent diagnoses. However, she wasn’t given any resources that might have given her a sense of community or a sense of what life might look like for a child with a brain injury. In the end, Katherine remained grateful that Cohen’s HIE was moderate. He did not have any seizures at birth, came off the breathing tube early, and responded well after receiving a blood transfusion. After eight days in the NICU, Cohen was ready to transition home.

Life immediately after discharge was hectic. Each week, their schedule brimmed with follow-up appointments with neurology, pediatrics, and the neonatal developmental clinic. Katherine was also referred to Child Development Resources (CDR), a nonprofit organization that provides early intervention for children with neurodevelopmental delays. She will never forget the first time she called CDR. A worker asked how many weeks along Cohen was at birth, and when Katherine said that he wasn’t a preemie, the worker’s response was unbelievably invalidating: “Oh, so he’s not a real NICU baby?” Was all the trauma her family and Cohen had endured not real? Was it not real enough that he came into this world not even being able to breathe on his own? Cohen might not have been the smallest baby in the NICU, and his outcomes might not be as severe as other babies with HIE, but that didn’t mean his struggles were any less valid or that he didn’t still deserve support and care.

After that initial conversation, it was decided that CDR would send over worksheets to help track Cohen’s development. At around a year old, Cohen started to fall behind in his fine motor and speech skills. He began occupational therapy first and speech therapy about a year after that, both of which he has been attending ever since. Although that initial conversation with CDR understandably left a bad taste in Katherine’s mouth, all of Cohen’s therapists since then have been wonderful and invaluable resources. For instance, Cohen was dismissed from neurology and orthopedics at only three months old, written off as “fine,” even though the future was so uncertain. Once Cohen had suspected childhood apraxia of speech and possible seizures, the therapists were able to connect Katherine to an amazing neurologist and an orthopedic doctor right away.

In addition to the therapists, another network of support Katherine is grateful for is Hope for HIE. Katherine was part of a mom’s group through the pregnancy app, What to Expect. However, once all the mothers described how amazing their first holds or deliveries were, Katherine felt like she couldn’t relate at all. Three months into her journey, after discovering Hope for HIE, Katherine read various stories about children who had passed away, were attached to machines, or had outcomes far more severe than Cohen’s. Again, Katherine felt somewhat out of place, like she didn’t completely belong here either. It was as if she was trapped in an isolating middle ground, where she had so much to be grateful for in terms of Cohen’s progress, but where she was also struggling with the memories of the huge trauma she had experienced. It seemed as if Cohen was simultaneously too sick for Katherine to belong to generic mom support groups but too healthy for Katherine to be part of Hope for HIE.

However, she soon came to realize that, even within the Hope for HIE community, there were many other parents who experienced the same imposter syndrome Katherine felt. There really is no single look to HIE, and just because others had it worse, that didn’t mean she wasn’t allowed to struggle with grief or need a supportive community. She has immense gratitude that Hope for HIE is unbelievably inclusive, constantly reminding parents, family members, and even people with HIE themselves, that there is no “one size fits all” and that all are welcome.

Now, at three years old, Cohen is thriving. He’s really smart and funny, and just by looking at him, you would never think that he has had to go through so much from such an early age. Cohen is truly the strongest, most determined person Katherine has ever met. Each day, Katherine feels so proud to just be his mother. Raising Cohen has, without a doubt, been a different way of life compared to raising her daughter, who did not have a birth injury. There’s a lot of extra work that goes into making sure Cohen meets his milestones, and there are times when Katherine has been so fearful that something will unexpectedly go wrong again.

In spite of this fear, Katherine will forever hold onto hope. For her, hope means having gratitude for each tiny sign of progress. For instance, up until two and a half years old, Cohen had only uttered a few words. Katherine did her best to teach him American Sign Language and how to use an augmentative and alternative communication (AAC) device. Although Katherine would love him even if he never formed a full sentence, hearing Cohen finally say “I wuv you” to her was everything. Katherine celebrates all the little things, whether the first time Cohen jumped, in spite of struggling to tell his body how to move, or the first time he was able to eat solid food. On top of teaching her to never take anything for granted, this journey has inspired in Katherine the confidence in herself to trust her “mom instinct” and use her voice to advocate for Cohen.

Though these past few years have not been easy, they have opened Katherine’s eyes to the fact that there was so much more she could have done to be supportive of the disability community in the past. She never intentionally withheld this support, but until she was personally impacted, she didn’t realize the extent of the challenges—logistical, emotional, physical, and social—that those with disabilities, and their families, face on a daily basis. Knowing Cohen has made her much more accepting, understanding, and knowledgeable.

Katherine continues to share her story to spread much-needed awareness. Even though Cohen’s outcome is on the mild to moderate side, Katherine hopes to highlight that, just because you cannot see a disability, it doesn’t mean there isn’t one. Invisible disabilities are very much real and worthy of recognition. Katherine also chooses to share her story because she has seen how vulnerability can serve as a bridge for human connection. Katherine hopes to show other parents that they are not alone, even if their paths don’t look the same. For, no matter how it may appear, there are other people out there ready to walk alongside you on this long, adventure-filled journey.