‘What are you doing, baby?’ I resuscitated him, and we kept going. The neurologists’ faces looked bleak.’: Mom brings son with Ohtahara Syndrome home after months in hospital

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“’What are you doing, baby??’ That was the first time I knew something was wrong. I was in my hospital bed, recovering from my c-section, chatting to our nurse about discharge when she looked down, said those words nervously, and rushed him back to the nursery. I noticed the twitching and knew exactly what she had seen, a seizure.

Courtesy of Heather Crowley

And just like that my fresh, 48-hour-old baby boy was whisked away to the NICU. Little did I know he would soon be taking his first helicopter ride, and we would spend our next 3 months living in a Children’s hospital. The first couple of weeks were a blur. I survived on very little information and even less sleep. We knew Tate was having some seizure activity but not to what extent. I work in the medical field, I know that most everything can be cured with a pill or a shot. No need to worry, I kept telling myself.

Courtesy of Heather Crowley
Courtesy of Heather Crowley

One afternoon, a team of neurologists popped into our tiny NICU room as they did every day, but this time they spouted off some letters and words. EIEE, Ohtahara Syndrome, Epilepsy. Epilepsy was the only word I came close to even recognizing. The neurologists’ faces all looked pitiful and bleak, no one said much. I looked to our seasoned charge nurse searching for comfort and answers but saw none, just tears welling in her eyes. I still didn’t know what those words and letters were, but I knew it was bad.

Courtesy of Heather Crowley

As they filed out of the room, I immediately started Googling his diagnosis. That’s the moment my world fell apart. I managed to make it down to the waiting room where my parents were waiting. Their eyes met mine, and all I could choke out was, ‘He’s not going to get better,’ then I crumbled all over again with strangers and secretaries staring at me awkwardly.

Since that day, it’s sad really how many families I have witnessed having those same waiting room tragedies with no privacy during the single worst moments of their life. Time after time, I have been sitting next to parents and grandparents who just received devastating news, and you just sit there in silence hoping you aren’t noticed. I’ve said many times, you can’t spend time in a children’s hospital and come out the same person. You can’t unsee the good and bad things that you witness there. It changes you forever, for the better or worse.

Some very dark days followed after that. Every night, I would cry myself to sleep, and every morning, I would wake up in the same hell with the same terminal prognosis. Then one day, I decided my son doesn’t didn’t deserve this. There is so much I couldn’t control, so much he couldn’t control, but my emotions and attitude weren’t one of them. He deserved a good and happy life. He deserved a mom who didn’t have tear-soaked eyes every time she held him. He deserved positivity and happiness and a childhood, and I was, and am bound and determined to give him that.

Tate was different from most babies in the NICU. His diagnosis, Ohtahara Syndrome, comes with a ton of complexities. Ohtahara Syndrome, also known as Early Infantile Epileptic Encephalopathy, is an uncommon form of epilepsy that is characterized by hard-to-control seizures and developmental delays. It can be caused by a variety of things such as infection, brain damage, metabolic disorders, or genetic disorders. We have participated in every diagnostic and blood test known to man, and we still don’t have a reason why Tate has EIEE. All we can assume is it’s something genetic that has yet to be discovered, so as of now, he is undiagnosed. We are hopeful that one day, science will catch up to us, and if not, maybe we can be of help to a child like Tate in the future.

Courtesy of Heather Crowley

Some of Tate’s struggles include not being able to suck or swallow, low muscle tone and inability to move, trouble breathing, as well as suffering from hundreds of seizures a day. He has been through two surgeries. The first, a GJ tube which allows us to feed him directly into his small bowel through a button in his stomach. The second, a tracheostomy which helps him breathe through a hole in his neck.

Courtesy of Heather Crowley

Despite all of these issues, I was still adamant that my baby got home as soon as possible. After learning the grave details of his diagnosis, I didn’t want to waste one more day of him staring at hospital walls, breathing the stuffy air, and not knowing his brother, extended family, and the comfort of our home.

On Friday, September 13th, (word to the wise, never discharge on Friday the 13th) we loaded Tate up and started the 4-hour drive back home. We made it just outside the city when Tate’s oxygen first dropped. I resuscitated him with the bag, and we kept going. We had been trained for this. What we weren’t prepared for was his not recovering. The next several hours consisted of me bagging him all the way down the interstate, pulling over on the side of the road, at gas stations, and finally me holding him in the backseat as my husband sped home. We just knew if we could get there, he would be fine. My dad said something that day I will never forget. He said, ‘How crazy is it that anyone else in that circumstance would be driving as fast as they could towards a hospital, and you guys are driving as fast as you can away from it?’ And it’s true, but in my heart, I just wanted my baby home. Whether that be for 1 day or several years, we needed to be home.

Courtesy of Heather Crowley
Courtesy of Heather Crowley

Equipment malfunctions, car seat intolerance, and sensory overload attributed to that drive from hell. We ended up throwing in the towel and stopping at an ER about halfway home. It felt like such a defeat, but I was certain if we didn’t stop, Tate would not survive much longer. I prepared for our children’s hospital to come to pick us up, but the ER physician saw the desperation on our faces and ordered an ambulance to drive us the rest of the way home. That 4-hour trip took us almost 12 hours to complete, but at the end of that night, we were all under one roof.

Courtesy of Heather Crowley

I remember lying on the nursery floor the very first night, discussing with my husband what we had gotten ourselves into. We were sure it wasn’t a matter of if but when we were going to have to take Tate back to the hospital to live permanently. We were so overwhelmed. We had resuscitated him all day, and he projectile-vomited all night. The doctors weren’t exactly thrilled to let us leave the NICU in the first place, but I had talked them into it. I remember our attending physician saying, ‘Your back up plan can always be to bring him back to us.’ Doctor’s don’t just say this, their plan is always to discharge. They want to get people out of there. But not my son. My son was so severe they were going to accept him living there indefinitely. I wish I could say that they were wrong or way off base when they spoke about Tate, but they weren’t. My husband, my mother, and I have all personally had to do CPR on Tate at home as well as watch him code and flat-line in hospital rooms, but so far, he always takes a big breath and comes right back to us.

Courtesy of Heather Crowley
Courtesy of Heather Crowley

For all of the hard times we have had, we have experienced even more good. Tate has gained many “inchstones” as we call them. He is delayed, but working so hard to grow and learn. He loves cuddles, lights, and to be talked to and sang to. He loves watching all of the goofy things his brother does. He goes on daily walks, he visits the lake often and has had many successful holidays with family. But most of all, he is genuinely happy. I can see it in the way that his eyes light up when he smiles.

Courtesy of Heather Crowley
Courtesy of Heather Crowley
Courtesy of Heather Crowley

Tate just turned a year old in June. We spent 5 months of the last 12 in and out of ICU’s with our sweet boy. Every day is hard. I don’t recognize my home: medical equipment takes the place of toy boxes, alarms play like music around here, I have a closer relationship to our nurses and specialists than our friends, and I still have to bag Tate several times a week. Our seizures are somewhat better, but despite all the medicine, he still has them several times a day.

Courtesy of Heather Crowley
Courtesy of Heather Crowley

But I learned way back in the NICU that a hard life doesn’t have to be an unhappy life. Our life is crazy…more than crazy, it’s insane. I didn’t know living like this was even possible until it happened to me. I am literally running an ICU out of my living room, being a 24/7 nurse while simultaneously swinging in the backyard, watching movies, and getting snacks for my 5-year-old. We have the most abnormally normal life. I don’t know what the future holds for Tate. I don’t know what it holds for any of us, to be honest, but we are together and we are thankful. And even so, it is well with my soul.”

Courtesy of Heather Crowley
Courtesy of Heather Crowley

This story was submitted to Love What Matters by Heather Crowley of Missouri. You can follow her journey on Facebook, Instagram, and her website. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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