Thriving with PH: Shannon Morrison

February 18,2020

My daughter Shannon is an eight year old identical twin with a vivacious passion for life and incredible strength.

When Shannon was in-utero, doctors were convinced Shannon would not survive, and with each and every appointment, they were proven wrong (she loves this story).

Shannon (Baby B) and Shaelynne (“Baby A”) were born at 30 weeks with Shannon weighing one pound, two ounces. Both girls stayed in the Neonatal Intensive Care Unit (NICU) and developed amazingly, but Shannon suffered disabilities due to her small birth size and underdevelopment.

At six months old, Shannon was diagnosed with pulmonary hypertension, which is a life-threatening illness that has already taken too many children. The arteries become narrowed and make it harder for blood to flow through to the lungs. As the pressure builds, the heart must work harder to pump blood through to the lungs. Without proper treatment and control, her heart will weaken and eventually fail.

Shannon’s PH is treated with two types of oral medication: a nightly injection and an IV-infused medication. Shannon wears a backpack 24/7 that carries the pump that centrally infuses her medication directly into her heart. Caution is used every day for playing, sports, bathing, and swimming. Shannon has to be monitored vigorously for viruses and illnesses because if she gets sick, she will require oxygen and possibly hospitalization.

Since Shannon’s heart was weakened, she was unable to learn to eat as well as an “average” child and requires additional nutrition that is distributed through a g-tube in her stomach. She is given formula feeds in her g-tube as well eating her favorite foods like pizza, french fries, and chicken nuggets.

During Shannon’s toddler years, she was a foot shorter than her sister. At two years old, she started getting nightly injections of growth hormones and now at eight years old, she is one inch taller than her twin sister. Doctors are amazed at how much she has grown and how she looks more like her sister now.

Shannon sometimes struggles to keep up with her classmates during rigorous play, as she tires easily, but she does not let anything stop her. She also has trouble with concentration and must adapt her learning style at school. Recently, she has struggled with anxiety and we are not seeing a therapist to help Shannon deal with the fears she has.

Shannon is followed by a great team of doctors at New York Presbyterian Children’s Hospital. Dr. Berman treats her PH in their certified PH clinic. Whenever Shannon gets sick with the dreaded viruses this time of year, we get the VIP treatment in their emergency room. Shannon would never go to any other hospital, as we consider Dr. Berman and her team family.

Shannon, her sister and I call ourselves the Three Musketeers. Right now, we live with “Nana” and “Papa” but when we get our own place, we will get a dog to train as a therapy dog.

Shannon just started to learn figure skating. It is a sport that we Three Musketeers can do together. It releases anxiety and builds muscle strength, which is so important when you have PH.

Happy breathing to everyone!

Shannon is a recipient of the Team PHenomenal Hope Unmet Needs Patient Impact Fund. Learn more about how this fund supports PH patients at teamph.org/unmetneeds.

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