On June 1, 2004 our princess Fionna was born. I was only able to spend 3 hours with her in the delivery room as she needed surgery to treat Pulmonary Stenosis of her heart. After several more surgeries and 3 months in the NICU, our Fionna was able to come home. She was on a feeding tube, needed intensive therapies 7 days a week, and required round the clock care. A short time later, Fionna was diagnosed with Angleman Syndrome, which among other things causes neurological conditions and ongoing seizures. The challenges that lay ahead were many.
Alexandria is a 4 year old girl who was diagnosed at 10 months with a brain tumor. She was started on chemotherapy. At 18 months she had a tumor resection, developed hydrocephalus and suffered from a stroke. After multiple shunt surgeries she was put on another intense round of chemo and suffered another stroke at 21 months.
Matt was born three months prematurely. During his eight-month stay in the NICU, he contracted an infection which created a blockage between the third and fourth ventricles in his brain – Hydrocephalus. His first shunt was placed when he was six months old and since then he has had five shunt revisions.
Zachary was born on January 21, 2000 6 weeks premature and was immediately transferred to Children’s Memorial Hospital for brain surgery to be treated for Hydrocephalus.
When he was almost four, Jacob was diagnosed with Hydrocephalus and a Hypothalamic Glioma. A tumor–the size of a large walnut–had decided to grow in the most sensitive area of Jacob’s brain. Due to where the tumor is placed, it could not be removed surgically. Also, the natural flow of Cerebrospinal Fluid was completely blocked off, resulting in a very complicated case of Hydrocephalus.
Luke Perry was born March 6, 2006. He was taken quickly to the NICU, so it wasn’t until hours after his birth that I got my first good look at our new son. The next week was a surreal rainstorm of meeting many new doctors, each with news of a different anomaly Luke had or explanation of a surgery he would need. It was soon discovered Luke had a genetic disorder referred to as a trisomy 8 mosaicism, which means instead of having a pair of 8th chromosomes, he has an extra copy in some of his body cells. Surgery was able to repair his kidneys, his eyes, and his malformed bowels. What it couldn’t fix was the agenesis of the corpus callosum. The corpus callosum is the area in the center of your brain which connects the right and left hemispheres. That section of Luke’s brain did not develop. Some people live their whole life with this condition and never know they have it, and others are significantly impaired. Luke’s genetic disorder is very rare so doctors didn’t know what to his future held. We were told to take him home and give him lots of love. Bad news would show itself quickly, good news will be slow.
Matthew was born on December 21, 2006. At six months of age, we noticed Matthew was not developing physical skills at a typical rate. Our pediatrician recommended that we consult with a pediatric neurologist… and so began our journey.
Adam was born in September 2002 after a very typical and active pregnancy. Adam had his first ambulance ride at an hour old and his first surgery within twenty-four hours. Adam was born with a form of Spina Bifida, called myelomeningocele, a birth defect in which a lump of fat from under the skin extends through the spinal column and attaches to the spinal cord, tethering the cord to overlying skin resulting in neurological deficiencies. In Adam’s case, his lower extremities were greatly affected causing him to have difficulty walking and a need for braces to help improve his gait pattern and endurance. In addition his Spina Bifida caused some of his organs to become paralyzed, which impacts his daily life.
Declan was born on June 20, 2010 at 24 weeks and 4 days, weighing only 1 lb, 14 oz. Due to Declan’s extreme prematurity, he has had to endure and overcome numerous life threatening conditions and spent six months in the Neonatal Intensive Care Unit (“NICU”) before he finally came home in December, 2010. One of the most critical conditions Declan faced at birth was an intravenous hemorrhage (“IVH”), or bleeding on his brain. As a result of the IVH, Declan developed Hydrocephalus.
Maureen, named after her grandmothers, was born on September 22, 2006. She was born with wisps of red hair, deep blue eyes, chubby cheeks and Hydrocephalus, a fatal condition if not treated.