Harrison's Story

The following is Harrison's story, as told by his mother, Sarah Santos:

"Harrison’s first visit to MassGeneral Hospital for Children was at 3 weeks old. He was in the Pediatric Intensive Care Unit (PICU) following an unexpected tracheotomy. At this point, we thought that Harrison’s issues were limited to airway issues, but over that last 20 months, his issues have led us to more than eight specialty departments within MassGeneral Hospital for Children.

Our most recent stay was a two-week inpatient stay for an abdominal surgery. Harrison had to have a repair of a hiatal hernia, a re-do of a Nissen Fundoplication— a surgical procedure to treat
gastroesophageal reflux disease— and had some adhesions removed. It had been a very stressful time for us as Harrison had been unwell for at least a month prior to surgery, and was quickly losing weight that had been difficult for him to put on in the first place.

The problems had been difficult to find, and we are very thankful for the collaboration and persistence of Drs. M. Shannon Fracchia, Daniel Ryan and Stephen Hardy. They took the time to listen to our concerns and did not discount our instincts, even when at first, they couldn’t find a cause for Harrison’s troubles. After finding the issues, Dr. Ryan’s team acted quickly, fixed the issues, and took the time to make sure that Harrison was on a good path before sending us home.

As we have two other young sons at home, extended stays like this are always difficult on us as a family. We feel fortunate to have built such a wonderful relationship with Harrison’s nursing team on Ellison 17, and with Harrison’s physicians. The relationships that we have formed with them make the admissions easier on all of us. It is a very comforting feeling not to feel like a number in a hospital setting.

Harrison’s team knows all about all of Harrison’s health issues, but also knows all about his family as well. His nursing team knows the names and ages of his brothers as well as some of their interests. They have proven to be strong advocates for my husband and me with the doctors and trust our instincts 100 percent. And they understand that being the parent of a chronically ill child is no walk in the park. They are very careful to make sure that my husband and I are confident and comfortable with the decisions that are made before we are sent home.

That level of care also extends beyond the nursing staff and the physicians. Our inpatient stays would not be as comfortable were it not for the child life specialists and volunteers. They take such care to make sure that both the children and the parents/guardians have everything they need, including breaks, to make the experience as comfortable as it can be.

We are thankful everyday that Harrison’s issues led us to MassGeneral Hospital for Children. We cannot imagine our lives (or his) without the involvement and care that he has received as a result of being a patient. Thank you, MassGeneral Hospital for Children!"