My husband and I were married in September of 2011. We already had three children from previous relationships, but we knew we wanted more right away. We struggled with fertility, as I am a cervical cancer survivor, but we found success in a positive pregnancy test around Christmas of 2012. I was considered high risk because of an ‘incompetent cervix’ and was watched very closely. Everything looked great and I had no scares or complications until July 8, 2013. I went to work, but I wasn’t feeling the greatest. I thought it was just the first day back to work after a holiday combined with pregnancy tiredness that was making me feel sluggish so I asked to leave early. That evening my husband and I were sitting on our neighbors porch when I felt my water break. It felt like an uncomfortable leaking. I had never experienced this with my other pregnancy and I wasn’t sure what was happening. It was too early to have the baby. I was only 33 weeks along. We rushed to the local hospital to get checked out. Upon examination, they said that I was going into labor and they wanted to admit me right away. My doctor didn’t deliver at the local hospital. The hospital we had planned to use was over an hour away. We were scared but we knew that the best chance our baby had was to drive to Columbus. There was no NICU close that would be able to give the care that premature babies need. We made the hour and a half drive in record time. I called the hospital on the drive and they had a room waiting for me when we got there. I was rushed into a room and attached to several monitors. I’m not sure how many people were in the room, but there were several. I was getting an IV started in one arm, while blood pressure was on the other arm, an ultrasound, fetal monitor, etc. I was getting all the things all at once. I almost passed out from just how overwhelming it all was and the doctor told everyone to take a step back. Once they finished getting everything set up and I was evaluated, they confirmed that my water broke, but it was a ‘slow leak’ and they wanted me to stay in bed for at least a few weeks so the baby had the best chance of surviving. The last few weeks of gestation are key in lung development. The next few days are kind of a blur. I wasn’t allowed any solid food for at least two days and I was getting a lot of steroids and nutrients via IV to help the baby develop more quickly. On July 11th, my doctor was checking on me when the baby’s heartbeat started to drop. I changed positions a few times and that didn’t help so we were rushed in for an emergency C-section. Jerry Noel Henson was born at 11:14 weighing 4 lb 2 oz. He was doing extremely well considering his circumstances. He was mostly breathing on his own. He didn’t need to be on the ventilator, which had been one of our bigger fears. Then at two days old, we were told that they would be sending him to Nationwide Children’s Hospital for evaluation. They told us not to panic that it wasn’t anything to worry about, but we knew better than that. It was the middle of the night. I signed myself out right away and we followed the ambulance to Nationwide. When we got there, we found out that he had been throwing up all night. His belly was a dark purple and very swollen. He underwent emergency surgery right away. He had necrotizing enterocolitis (NEC). It meant his intestines were dying. We don’t know the cause of this disease, but it is more common in preemies. There is no cure. All they can do is remove the dead tissue and pray that it doesn’t continue to spread. We were told that he probably wouldn’t survive the next few days. A huge portion of his small and large intestines was removed and they didn’t completely sew him back up because they would need to go back in soon to check for more damage. Two days and another surgery later, there was a very minimal amount of more dead tissue, but the surgeon informed us that it still didn’t look good. He told us he felt that saying he had a 2% chance of survival was being too optimistic. That night Jerry coded. They told us there was nothing else they could do for him and asked if they should call anyone for us. We just held his little hands and cried and prayed. Slowly the numbers on the machines came back up and he was still with us! Jerry ended up having three surgeries before he was a week old with 70% of his small intestine removed and 50% of his large intestine removed. And then there was also whatever complications he would have from the lack of oxygen to his brain for that time. The first two weeks, we never left his side. We napped in recliners next to his little incubator-looking crib. Things became fairly routine then. All we could do was wait and see. He spent the next couple of months getting all of his nutrition by IV with his intestines ‘disconnected’. They needed time to rest and see if they would grow back together and be functional. After two months, he had another surgery to reconnect his intestines. Everything had grown the way doctors had hoped but now we had to wait and see if his body would process food and work the way it’s supposed to. At this point, doctors were still only giving him a 50% chance of surviving. More ‘wait and see’. It could take up to another two months to find out if it was a success. But we didn’t have to wait long. It was less than a week and he had pooped! I have never been excited about poop in my life, but I was that day. We eventually stepped down from NICU and got a private room on the GI floor. Medications and machines were slowly eliminated and his weight was up and down. Around November, he was down to just the PICC line (IV on steroids) and the feeding tube. His weight was up and down and he was vomiting a lot, but it was manageable. Eventually, we were released to go home the week before Christmas. We spent 5.5 months in the hospital and it was so surreal to be home in time for Christmas. From there, it was just a lot of therapies and doctor visits. He began to thrive as soon as we got home. I eventually stopped giving him the tube feeding formula and started making my own using real food in the blender without the added preservatives. He was developing slower than other kids his age, but that was to be expected and therapy was helping. On November 20, 2014 we went to a routine developmental assessment and got a diagnosis we were not ready for at all. The specialist informed us that Jerry has Stage Three Spastic Quadriplegic Cerebral Palsy. She said he would never walk and have very limited mobility. We were devastated but did not believe that he would never walk. Our God is bigger than any doctor or specialist. We knew that it would just take more work, but we did not lose hope. The following year we saw that same specialist again. While the diagnosis didn’t change, her expectations did. She said that he had improved enough that she had no doubts he would walk, he would just need a walker or crutches. Not much has changed since then. We were able to remove the feeding tube last year and Jerry uses his walker to go everywhere. He has a wheelchair, but we really just use it for long distances. We are working toward proving that doctor wrong again and not needing any assistive devices to walk, and we will get there. He has had a few more surgeries over the years. The dead parts of his brain were sending bad signals to the nerves that control his arms and legs. In 2016, had a surgery that tests all the nerves and cuts the ones that aren’t ‘firing’ correctly. Over 70% of the nerves to his legs were cut. After that, we had extensive physical therapy (again) to retrain him how to use his legs. Another of the bad signals from his brain keeps his muscles tight. The tightness in his legs was pulling his hips out of socket. The day after his seventh birthday he had surgery to remove part of his pelvis and reseat his hips where they should be. He spent the rest of the summer in a cast from the waist down. He will have another surgery in the next few years to remove the screws that were placed, but it will not have such a long recovery. Jerry has been defying the odds and proving doctors wrong his entire life and he’s not stopping now! Despite all of his setbacks and odds against him, he is the happiest person you will ever meet. He always has a smile on his face and is laughing. He is so sweet and has the purest heart of anyone I have ever met. People are always telling me that they’ve seen him at school or therapy or church and he’s such an inspiration to them. I know God has big plans for him! He lives by Philippians 4:13 “I can do all things through Christ which strengtheneth me.” You can follow his journey at www.facebook.com/JerrysJourney if you’d like to keep updated on his progress.
Written by Sarah Henson aka Jerry's Mom
Photos by Holly Gee Photography and some family memories from Sarah