Harry's story began almost six month before we ever got to meet him. An abnormal ultrasound at 13 weeks sent us to the office of a high risk specialist who gently informed us that the scan showed indications of severe and potentially fatal genetic issues. There was, he explained, a new procedure that would allow us to know for sure with no risk to our baby. We agreed and, along with our family and close friends, spent the next week in stunned and desperate prayer. The results came back the week before Christmas, a thrill of hope into our weary world. The genetic test was clean, they explained. Our son had a rare condition called an omphalocele, an abdominal wall defect, and would require surgery to correct it after birth. Our Doctor confidently informed us that he had delivered several such babies before and helped prepare us for how our picture of birth would change.
In February, we met the first member of the cardiology team who would come to know our little boy so well. The ultrasound showed that Harry also had a congenital heart defect known as Tetralogy of Fallot, not uncommonly paired with omphaloceles, and thanks to modern medicine, also treatable with surgery. Far more concerning was the high level of fluid around his heart. We wept, and prayed, and looked at the possibility of transfer to a even higher risk treatment facility. The next appointment, in what was to become a hallmark of Harry's treatment, confused doctors looked at us and explained that they didn't know where the fluid had gone, but the danger had disappeared.
The rest of the pregnancy was a series of similar dangers and resolutions, culminating in a month of bed rest. Meanwhile, Jenny began the process of asking the Air Force to make an exception to policy and allow her to transition to the Reserves. Harry's projected medical care for the first years of his life would necessitate having a parent at home.
Harry arrived on June 3, yelling at the top of his lungs and weighing a very respectable 6lb 12oz. He had his first heart surgery to place a shunt at six days old and did outstanding. However, in recovery the doctors discovered that he had a diaphragmatic hernia and recommended we medevac to Primary Children’s Hospital in Utah. Robert and Harry boarded a plane for Salt Lake City, while Jenny and Mimi followed by car the next morning. Two days later the amazing surgical team at Primary quickly repaired the hernia and confirmed Harry’s diagnosis as a full Pentalogy of Cantrell. While recovering, another piece of Harry’s medical puzzle was found - heart arrhythmias. The next three months were spent watching Harry grow and learn to smile, play, and breathe with less and less support. By our last month there, Harry’s bedside was a Grand Central Station of nurses and doctors who would stop by for one of his trademark grins and wiggles. We learned how to navigate his oxygen equipment and the monitor that would allow us to bring him home, to place a feeding tube and operate the associated pump that would feed him until he could learn to eat on his own. On August 29th, a widely grinning nursing staff happily wished Harry a “Good trip to the zoo” (NICU code to keep babies from being contrary) as his parents, grandparents, and puppy loaded up for the drive to Las Vegas.
Harry settled in at home and absolutely thrived. He loved snuggles and storytime, trips in the car and napping to any music he heard. His Grandma, Mimi, and Aunt Catherine came in turn to help out his nurse while his mom finalized her transition from active duty to reservist. Harry’s favorite time of day was morning – early morning – as he would dance, grin, and happily fill as many diapers as his dad could change. Over the next month and a half, he figured out how to stuff all of his toys in his mouth, to start holding up his own head, and best of all – how to laugh. Once he figured it out, anything (including himself) would get him giggling without stop.
Mid October, Harry started having difficulties maintaining the levels of oxygen in his blood, leading us to the emergency room of the children’s hospital. His cardiac team quickly realized that his shunt had begun to close and planned a procedure to stint it open. The procedure went well, but as Harry recovered his heart arrhythmias returned in a deadly, uncontrollable fashion. Over the next month and a half, the doctors tried in vain to adjust his medications to bring them under control. Simultaneously, we were also trying to wean Harry off of the ventilator to breath on his own again. However, the stress from weaning was causing his heart stress and in early December, we decided to attempt a tracheostomy so that Harry could outgrow the stress on his airways. The day of the surgery, Harry went into cardiac arrest; after the doctors had successfully resuscitated him they decided that it would be necessary to perform an ablation procedure to remove the heart defect that caused arrhythmia. The ablation procedure went very well but wasn’t completely successful, with a small amount of medication controlling the remaining arrhythmia. The day before New Year’s, the tracheostomy was successfully completed and we began a homeward trajectory.
Late January, Harry simultaneously developed an infection and his heart arrhythmias returned. His recovery wasn’t going as expected, and while the doctors knew something was very wrong they did not know what. On February 6, an MRI and CT scan revealed that a blood clot had traveled to a major artery and was slowly shutting down Harry’s spleen, liver, and other internal organs. We prayed for a miracle but also prepared to make him as comfortable as possible. Sunday, February 7, we spent the day holding Harry, reading to him, talking to him, and loving him as much as possible. Shortly before midnight, he fell asleep in his Daddy’s arms and woke up in his Father’s. The doctors and nurses that had also become his family mourned beside us.
Harry’s life was full of miracles, large and small, as he defied all the odds of his diagnosis to bounce back time and time again with the sweetest spirit. While we wish we could have held him here with us, we know that he is now fully healed and waiting for us with his Dandaddy. We cannot express the extent of our gratitude to our military family and command who made it possible for us to spend all of Harry's too short life staying with him and loving him.
