By Heather Crowley
Mommy to Tate
Born June 2019
Ohtahara Syndrome

Recently married with a three-year-old stepson, my husband and I decided to try to get pregnant fairly quickly so that the kids could be close in age. We were pregnant within a couple months of trying and it all was working out as planned. I had a seemingly normal pregnancy with no major red flags. On June 21, 2019, I went in to be induced and delivered a beautiful baby boy via c-section. I had no idea that three days later my baby would be intubated and flying to St. Louis Children’s because of nonstop seizures. My life would never be the same.

Our entire stay in St. Louis, I was usually there alone because my husband had to continue working. But on one particular day, my husband and my parents were both visiting. My husband and I were in Tate’s room when the neurologists unexpectedly stopped by. Up until this point, no one had discussed with us the severity of Tate’s seizures or his condition. We thought that what he was going through was temporary. About 3 doctors came into the room and told us that they had figured out what was wrong with Tate. In my head I was thinking “hallelujah.”

They started rattling off words like EIEE and Ohtahara Syndrome, like I knew what they were talking about. They asked if I had any questions and I just said “no.” I knew something was wrong though when I looked past them to our nurse who was changing Tate’s diaper and could see tears in her eyes. As they left the room, I started googling the words the doctor had said and I got the biggest gut punch of my life: Uncontrollable seizures, developmental delays, grave prognosis. Average life span, 2 years.

I remember finding my parents in the waiting room and the only words I choke out were “he’s not going to get better.” I couldn’t control my sobs as I searched for privacy among the other NICU families. The more we googled, the worse it got and finally I just had to shut the phone off. I remember dreading the calls back home to family because I couldn’t even say the words out loud or come to terms with what was happening – my baby had a terminal diagnosis.

My hopes and dreams changed week to week, day to day, and hour by hour when we were in the NICU. For the longest time, I spent every moment searching out the rare success stories, the miracles. I was holding out the hope that the doctors had it wrong and we would be the family to beat the diagnosis, science and genetics.

Then the weeks drug on and Tate didn’t get better but he also didn’t get worse. He wasn’t like a normal NICU baby. We were there but nothing was changing. Our biggest hurdle was his breathing. He was labeled as “the desat baby.” He had these extreme random desaturations where his oxygen would drop to 10 or 20 in the blink of an eye. Sometimes it would turn into a code blue and CPR, sometimes he would come out of it on his own. But there was no answer as to why he was doing this and how to fix it.

At that point, I knew things weren’t going to change and I was ready to come home. I worked very hard with the team to learn every aspect of his care so that I could give Tate every chance to live, but also allow him to be at home and meet his brother and extended family. Things were so touch and go that I didn’t want to waste any more time hospitalized. I wanted Tate to have a real life, no matter how short beyond those four walls.

I spent a lot of time in silence and tears. I would hold Tate and cry, drive and cry, try to sleep and cry. But then one day as I listened to an old hymn It is Well With My Soul, I decided that it was enough. Tate didn’t deserve to have a life where everyone is sad around him. He already goes through so much, he deserves all the happiness in the world. And that was what I was determined to give him.

Tate’s diagnosis has affected our whole family. It is our normal now, but we essentially run an ICU out of our home and then a mobile ICU when we decide to go somewhere. His diagnosis and health affects every decision we make, whether we get to go somewhere, and even my career. But all those changes are worth it if it means having him in our family.

I wouldn’t really say that things have improved in the sense that Tate has gotten better. He still has all of the same medical problems that he did at birth. We still have daily seizures, he doesn’t eat anything by mouth, he is immobile and wheelchair dependent, and still has oxygen desaturations and breathing problems that ultimately resulted in another long hospital stay and trachestomy. But things have gotten easier in other ways. He still has medical problems, but as I have gotten to know him better, I have been able to better care for him. I have come to terms with our situation and learned to enjoy our life as it is. I have connected with other families like mine, which is lifesaving in itself. We have a great support system locally and worldwide helping us along the way.

We do a lot of fun things that I never imagined possible with Tate. We go camping and boating, and he has been on multiple family vacations including a trip to the beach! We soak in every big adventure and accomplishment, but we also soak in the normal stuff too like the cuddles on the couch, family movie nights, sunsets on the back deck. Those are all just as great, because I never knew if I would have these memories with him and I never know how many more we will get.

Honestly, I don’t think much into the future. The future terrifies me, so I don’t go there. We take it one day at a time and enjoy every minute that we have.

On Angels’ Wings is an organization I will always be thankful for. Our first session was for Tate’s first birthday, a celebration I didn’t know I would get to have. It was during the pandemic, we had just come out the hospital with a new trach, and life felt unstable. Our photographer was so respectful of our fear that our son could easily get sick and took every precaution to get us family photos despite all the struggles.

The journey session photos every year after mean just as much. Tate’s prognosis was 2 years of life, so every year we get a journey session feels like the biggest victory. And On Angels’ Wings is like our cheerleader and friends that have been with us the whole time. Through the years, there have been times when money is tight, so to know that we get photos of Tate to keep regardless of our budget is such a gift and weight lifted.

Take the pictures. No matter where you are in your journey. We have taken photos of Tate at his worst and his best. Maybe you can’t handle looking at the pictures now, but at least you won’t regret not having them. Every moment is a part of your child’s beautiful, perfect life.