Kalicia's Story: Parent's Letter Project Congenital hydrocephalus and cystic mass (tumor) - Kalicia's parents

We moved to Arlington, VA, in March 2009, our daughter, Kalicia, was expected to be born at the end of April. During what we believed was a routine ultrasound on April 2, we were surprised to learn that Kalicia was diagnosed with congenital hydrocephalus with a cystic mass (tumor). We were devastated. The images from the ultrasound showed severe displacement of the brain. The doctors could not give us any certainty on Kalicia's ability to live outside the womb or how severe this would affect her once born.

Hopefully, reading this letter will afford you some comfort as you journey down this road. Within hours after Kalicia was born on April 7, she was moved to Children's National. I had never been to the hospital. When I arrived, I was met by a concierge. What a blessing! Hospitals can seem like a maze at times. She showed me where there were showers, waiting rooms, the cafeteria, etc., and was such a help with all the little things to take care of you, the parents.

We chose Children's National because of their excellent neurosurgical staff and their specialization in newborn and children's conditions. The medical staff stabilized her and immediately began a course of action that included an attempted biopsy and external shunt (drain) to relieve the pressure. The tumor/cystic mass was believed to be benign, but the type and origin was unknown.

As parents, you will speculate on all kinds of options and outcomes – ask all the questions you want. The first few days were agonizing, doctors and nurses only could tell us what they knew, which was far less than we wanted to know. The entire Neonatal Intensive Care Unit (NICU) staff and neurosurgeons were very gracious and patient at our constant questioning and probing for answers. They provided as much detail as they knew and explained the possible courses of action.

Anticipate unforeseen circumstances, as they will present themselves. We had a tumor of unknown origin apparently producing its own version of cerebral spinal fluid. She developed bacterial meningitis and had some seizure activities. Ultimately, we chose to block the blood supply to the tumor and wait to see the outcome before considering surgery to remove it. This journey is a marathon of duration rather than a short race. Kalicia endured ups and downs throughout her stay. We placed our faith in God and the hands of the professional medical staff of Children's National and were able to weather through the challenges. Kalicia was in Children's National for three months and three days before being discharged and continues to improve as she grows and develops.

You'll be visited by the neonatologists and special staff (dietician, case manager, resident, and fellow) from the NICU along with the neurosurgeon's team of specialists. Even if you don't see them, other specialists are working on your child too. They include the Divisions of Radiology, Pathology, Neurology, Infectious Diseases, and Pharmacology. You are part of the treatment team! They will come by on "rounds" every day and I recommend being there to discuss your child's care with them. They value your active participation. The medical staff desires your observations and insights into your child; they are invaluable in assisting the doctors in the treatment and care. You see your child more often than any one of the medical staff and will notice subtle changes in behavior sooner than the doctors or nurses might see it. If you can't make the rounds with the doctors, talk with the nurses that you see every day you visit. They are very helpful in relaying information between you and the rest of the hospital staff.

I could go on and on about how pleased we are with the care provided to our precious Kalicia. It's tragic that you are at the hospital at all. However, I don't believe we could have received better care anywhere in the world. You are in good hands. They really do care about children and they care about you. May God's grace be with you.

Sincerely,

Kalicia’s parents, Kelly and Cressy

Treatment Team

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