Dear parent of a child born without their pituitary gland or a child that has suffered bacterial meningitis,

My daughter, Ava was born full term on January 12, 2006. She weighed 6 lbs, 7oz. There were no complications or signs of any distress at the time of her birth.

However, she was transferred to the Neonatal Intensive Care Unit (NICU) the next day; she was in respiratory distress and exhibiting signs of hypoxemia. She remained in the NICU for 12 days because she was having difficulty breathing, eating, and showing signs of severe reflux. She then went into septic shock. We later found out that she had developed a bacterial infection called enterococcus faecalis. She was intubated and placed on total parenteral nutrition for the remaining time until she was transferred to Children’s National Medical Center’s NICU for a broviac and long-term IV antibiotic treatment. Neurological follow-up at Children’s indicated that she had an absent pituitary gland and had suffered diffuse brain injury. Additional tests and consultations revealed symptoms of bacterial meningitis, microcephaly with extensive bilateral cystic encephalomalacia, pyriform sinus stenosis, severe gastro-esophageal reflux, and panhypopituitarism.

The doctors told us that she would never walk or talk. I am happy to say that Ava is walking and talking! She is currently 5 years old but is cognitively and motor developmentally delayed by about 24 months. She receives most of her nutrition through her G-tube, however, she is making progress in eating and feeding herself. Last year, she was diagnosed with a seizure disorder, an abnormality of her heart in the aortic valve, and a tree nut food allergy. Ava is on nine different daily medications to control her reflux and seizures, and to replace her pituitary functions.

She loves her big brother, Josh. He makes her laugh all the time. She says: Hi Guys, Thank you, Bless you, Hi Josh, Hi Mommy (my favorite), No! (her favorite), and many other words and phrases. She continually amazes us, she is truly a Children’s miracle!


Ava's mom, Susan



Video: Hydrocephalus, A Parent's Story

Neurological disorders - Letters


«  Prev 1 2 Next  »