“By the grace of God, she/you will get through this.”

Among other things, we will always remember those words uttered by our obstetrician after Gabri’s birth…

On June 21, 1997, our daughter Gabrielle was born.  She was delivered full-term at the local hospital with no previous issues during pregnancy and two “normal” ultrasounds.  Upon birth, it was quickly discovered that things were far from normal as she immediately struggled to breathe. She was immediately intubated in order to breathe with the help of a ventilator and transported via helicopter to Children’s National Medical Center’s Neonatal Intensive Care Unit (NICU) in Washington D.C.  With an unknown prognosis, an unknown journey had begun.   Gabrielle was born with a Congenital Diaphragmatic Hernia.  We didn’t find out until several days later, (of our own accord while in the Research Library at the Hospital) the exact severity of this condition.  Her condition deteriorated while on the ventilator, necessitating a transition to ECMO to provide adequate heart and lung support. It was several days before she would even be considered stable enough for the surgery required to repair the hernia.  This surgery ultimately went well, but now excessive fluid, draining from the thoracic duct (chylothorax), was preventing proper inflation of her lungs. It likely was caused during an attempt to place an intravenous central-line. Several attempts were made to relieve the fluid build-up (7 or 8 chest-tubes and associated intubations… many additional intravenous incursions) but another major surgery was ultimately recommended and required to stop the fluid.  Gabri underwent many ups and downs, with additional complications along the way.  Finally after three months, on September 25, 1997, she was discharged from the NICU and able to come home.  She came home on a feeding tube and multiple medications.

During the first winter, following the advice of our pediatricians, Gabri was administered RespiGam to prevent RSV. At that time, it was IV-administered in the hospital over several hours, once a month during the season.  Over the next few years, whenever Gabrielle caught a cold, it always turned into something severe.  This required multiple anti-biotic courses and various nebulizer and steroid treatments. She also experienced seizures that at times seemed to be triggered by the onset of a cold or possibly an allergic food reaction (we found she was allergic to milk and appeared to be very sensitive to food coloring, particularly red).  With the help of her neurologist, the seizure disorder was finally brought under control following several unsuccessful preventive medicine attempts over many months.  Concurrently, we attempted preventative treatments: asthma-type (reactive-airway disease) prevention drugs, etc.  At the age of four, Gabrielle was hospitalized with severe pneumonia, prompting our desire to take a closer look at her cardio-pulmonary health. We engaged the care of a Pulmonologist and discovered, through imaging, an additional birth defect involving one of the arteries of her heart (double aortic arch) that required surgery to repair.

Along the way, we also discovered that Gabrielle had bilateral hearing loss, possibly caused by the medicine lasix that was used as a diuretic during about her first year of life.  Given what she had already faced, this was not a big deal in the grand scheme of things…

Throughout this process we learned how significant the ‘art’ aspect of medicine and patient care can be. Not everyone is as skilled as the next. Generally, your child is not the only patient and often is categorized as one of ‘these babies.’  It is so important to be as involved as possible in your child’s medical journey in order to be the best possible advocate for them.  It allows you to be aware of important details that may be unique to your child’s categorical diagnosis… and continually make/remind others involved in your child’s care of those details. It is also therapeutic.

IV’s… intubations… nebulizers… surgeries, etc. As anyone would, we found the journey to be emotionally and physically challenging and draining to the extreme.  Support comes in many ways.  At the end of the day though, it is about your child, not you.  We found that keeping that obvious yet subtle perspective and focus provided the foundational support that a journey like this required, especially through the toughest times.  Gabri is now 13 and in seventh grade. She now provides us with just the typical emotional and physical parental challenges. She is doing great!