Featured Cherub of The Week is Samuel Smith. Samuel is the son of our Arkansas CDH International Ambassador, Heather Smith. Heather has been impacted by CDH in a number of ways. She had CDH and her son, Samuel, had CDH. Heather’s diaphragmatic hernia didn’t show up until she was two months old, so it didn’t interfere with lung development. Heather began having trouble breathing when she was two months old and it turned out she had CDH. Heather had this to share about her son Samuel:
“We found out that Sam would have a congenital diaphragmatic hernia at my 18 week anatomy scan. We were so excited to find out the sex of our baby but the ultrasound quickly became very serious. The doctor said, “This baby has a diaphragmatic hernia and will need surgery as soon as he is born.” I was familiar with what that was because I also had a diaphragmatic hernia that showed up at two months of age (my lungs were not compromised and were fully developed so I stayed in the hospital a week and have had very minor complications from it.) The doctor wanted to refer us for tracheal occlusion surgery but after researching we decided to get a second opinion. The first doctor gave us little hope that Sam would survive past birth. The second doctor we visited had a much more optimistic outlook. At 39 weeks gestation Sam was born after a long labor, he didn’t cry after birth and was immediately intubated and put on an oscillator. I think that going through the pregnancy I felt prepared and educated about what would happen after birth but when I saw him I realized it was going to be a lot harder than I imagined in my mind.
At two days old Sam was placed on ECMO and stayed on ECMO for 11 days. My husband and I were so fearful of ECMO but when he was on it we felt sure that is what was best for him and he was much more stable on ECMO. After he got off of ECMO we thought we could breathe and would be on the upside of his journey. However, Sam began to have severe blood pressure issues and nothing the doctors tried got his blood pressure up. It is such an awful feeling to sit by your baby and see them getting sicker and sicker. There was a constant fear that the doctors would come and tell us that they had done all they could and we would have to let him go. Over the course of two days he gained over five pounds of weight from fluid buildup and went into kidney failure. He also began having seizures (we later learned that he had had a stroke). He had to go on dialysis to rid his body of toxins and due to his kidney failure. That night was one of the scariest times of my life, I was so unsure that he would pull through and it felt like we were losing him. I remember having to take a break from sitting next to him and went into the waiting room and prayed. During Sam’s short life I had prayed to God to spare him but I felt such a peace in God’s sovereignty that night and comfort that whatever happened God was in control and I could trust Him. I stopped feeling the same level of fear every time the doctor’s came in the room. Sam did pull through that night and the dialysis started working and his kidney’s turned back on. He remained on dialysis for five days and then he was cleared to have his surgery to repair his diaphragm. We were so excited and felt like we were moving in the right direction. An hour into surgery the surgeon came to talk to us and told us that Sam’s intestines were badly damaged due to a volvulus (a kink in his intestines). They were not sure if they would be able to save them and so they put his intestines in a silo to watch them for several days (basically his intestines were in a bag on top of his stomach with half of his intestines still inside and half outside his body). Thankfully, within three days his intestines became pink and the doctor’s didn’t feel like they would need to remove any of them. About a week after surgery to put his intestines back in, when Sam was a month old I held him for the first time.
After his surgery we expected Sam to be on the road to recovery but he hit another bump a couple weeks later when he got a chylothorax (a type of pleural effusion that contains lymph). They tried medicine and special “skim” breastmilk to help it dissolve but ended up putting a chest tube in to resolve it. The week of thanksgiving, when Sam was 69 days old he was extubated and we got to hear his little cry for the first time. As his doctor says about Sam being extubated, “he lost his tube and never looked back”. He was finally making great progress without complications. On Christmas eve he was able to nurse for the first time and, miraculously, had no trouble nursing. A couple weeks after that he got to stop wearing oxygen because his ECHO showed no pulmonary hypertension. On January 26th, after 133 days in the NICU, Sam got to come home from the hospital. He continued to be closely monitored and we didn’t leave the house until June to avoid sickness. He received occupational, physical therapy, and speech therapy but has now tested out of all of those.
He is three years old now and is a typical little boy that like trucks and playing in the creek. If I was going to describe our NICU experience I would say that it was very scary and hard but the good times are really good. I can look back and remember the scary times, just as often, I remember the amazing people we met along the way.”
