Henry was born the evening of February 26, 2014, at St. Mark’s Hospital. He was a full-term baby, so not your typical candidate for the NICU.
During delivery, there was a uterine rupture that caused severe disruption to the flow of blood and oxygen. Henry was delivered quickly by C-section, but his body was very gray and limp. The doctors and nurses performed CPR for 15 minutes before he was able to breathe on his own. His APGAR scores were 1,1,1,3,5,7, at five-minute intervals, so he was not well.
Henry was taken to the NICU immediately after delivery. The doctors eventually told us Henry had experienced severe hypoxic ischemic encephalopathy (HIE). After some discussion it was decided that the best course of action for Henry would be to transfer him to Ï㽶ÊÓƵ of Utah Hospital where he could receive total body cooling treatment. This is where Henry’s body temperature would be dropped to 92.3 degrees Fahrenheit to avoid swelling on the brain.
Despite the morphine and the general discomfort Henry experienced while being cooled for three days, he showed progress. He opened his eyes and responded to sounds, especially the sound of his mom’s voice. Seeing him cold, not being able to hold him or be with him, as we had other kids at home was hard. But we knew the treatment was the right call, and we were optimistic that his brain scans would be positive.
As he was warmed to a normal body temperature on the third day, Henry experienced several seizures. We found out this was common, but it did cause concern. Henry was taken to Primary Children’s Hospital for MRIs to determine the extent of the damage caused during his birth.
Once the tests were complete we were finally able to hold Henry for the first time. Time stood still, as we cuddled our warm, bundled-up five day old baby boy. That morning we met with Henry’s doctors and nurses to hear the results. Henry had mild cerebral palsy.
Hearing the specifics about the amount of damage caused and the locations affected in Henry’s brain was difficult. He looked so perfect in our arms, but we weren’t sure what his diagnosis meant. We wondered what his life would be like. We wondered what kind of care would be needed and how we would handle it.
As we listened to his doctor explain the results of his scans, it was difficult to remain optimistic. They explained that because of this cooling treatment, Henry living a normal life was possible. They encouraged us to be open to his development and his success. This gave us hope.
We were able to bring Henry home on oxygen after 11 days in the NICU. That is when the real work began. We were referred to specialists who empowered us with so much information to help Henry succeed. He started therapy within a few months. His body was so stiff (high muscle tone) that as soon as he could raise his head, if he was on the ground while he was on his belly, his whole body would turn over (much earlier than he should have been able to roll over).
Every day, week, and month was focused on helping him get to the next milestone. We didn’t know if he would be able to roll over, crawl, walk, or talk on his own so his therapists helped us teach his body how to do those things.
Hours and hours were spent moving his body parts to teach them how they were supposed to move. The idea was to reverse engineer the pathways to the brain, and it worked! Henry is and always has been a hard worker, but cerebral palsy has forced him to work that much harder.
Eventually he rolled over (the correct way), so then we worked on crawling. Although delayed, all of the hours of time he spent on the floor made the sounds of his hands slapping the floor as he crawled that much sweeter. Milestone after milestone Henry passed them all. His tone gradually softened, his flexibility increased, and his word count did too.
Henry was in some sort of physical therapy from the moment he was born until he was five. By the time he was five, he was playing soccer and golf, riding his bike without training wheels, learning to ski, and generally doing enough activities that those activities became his therapy.
Henry has proven that the brain and body can find new pathways to communicate with each other when the original pathway is interrupted. It takes work, and Henry is always ready to put in extra effort. That is the difference. He is reading above grade level, working hard on his soccer teams, and playing the piano.
We see his cerebral palsy mannerisms occasionally. When he is nervous or in a difficult physical situation his right side still tightens. His fist clenches and his toes turn in. We are working on speech clarity (his tongue has tone challenges too), but not much more than any other third grader. And most of the time if you didn’t know he has CP you can’t tell.
Henry is a miracle. They do happen. We hope someone that has a child in the NICU will read this and know that even if the diagnosis is bad, miracles can and do happen with these kids.
Henry has a gift that we think comes from the trauma he experienced at birth. From a very young age, Henry has always found the person in the room who is having a tough time. That person gets an extra hug or a smile. He knows who would benefit most from cuddling during a movie. He has a level of emotional intelligence that seems almost natural. Life is full of miracles, but this ability continues to surprise us as we watch him grow.
As his parents, we have profound respect for the nurses and doctors who cared for Henry and continue to help him progress. Their support has given us hope and knowledge that has made supporting Henry easier. Some kids have harder starts than others, but just because the start is rough doesn’t mean the rest can’t be great.
Meet Our NICU Alumni
This is a special project that documents our NICU alumni. We are so grateful to watch these amazing young patients grow into their lives, despite a challenging start.