William will always celebrate two birthdays: one on January 10, 2005 when he was born 10 weeks early and two days later on January 12, 2005 when the Seattle Children’s Infant Intensive Care team saved his life after he almost died of a pulmonary hemorrhage. His doctors, nurses and respiratory therapists had to “hand bag” him to keep him alive for almost 12 hours including during the ambulance transport because he couldn’t breathe on a ventilator. As parents, it is your worst fear to watch your newborn child wither before your eyes. Nothing can prepare you for it and nothing will ever make you ever forget.
A parent is a protector and we were utterly helpless. It sounds like a cliché, but William truly is a miracle, medically and spiritually. After the harrowing ordeal of surviving the hemorrhage, he developed almost every major premature illness affecting his eyes, lungs, heart, intestines and brain.
Sadly he had a brain bleed, (a bilateral Grade III Intraventricular Hemorrhage), which caused post-hemorrhagic hydrocephalus which to date has required a total of three brain surgeries for shunting the excess cerebral spinal fluid buildup caused by a blockage from his brain bleed (one was a subgaleal shunt prior to the VP shunt and one revision of the VP shunt) in November 05.
Hydrocephalus is a life-long, life-threatening neurological disorder that is treated by a shunt (catheters and tubing to mechanically reroute the fluid) but it is not a cure. William started episodic vomiting at the beginning of October 2005 and continued to vomit once a week for a duration that lasted anywhere from several times an hour up to every hour for two to three days until November 13 when he had a shunt revision. He also suffered from two tonic clonic seizures one which lasted for two hours where he stopped breathing (he is in the 1.4% category of having a seizure that lasts for more than 20 minutes). William is now on anti-seizure medication. His neurologist will keep him on medication for at least three months. He was hospitalized once in October for dehydration and kept for observation of a shunt failure. The neurosurgeons believe now he was having intermittent shunt failure for almost a month and a half, which they likened to a sink drain that partially clogs, water builds up and slowly drains over time, except a sink doesn’t vomit and feel awful like he did.
The first two months of William’s life he struggled to live and then heal at Seattle Children’s and many months after with follow up appointments. Today William is the happiest baby ever and to look at him you would never suspect his near death experience and long hospitalizations. He might have some developmental problems in the future but we are just ecstatic that he is simply alive. He loves to laugh and squeal, stare adoringly at his big sister Claire and then pull her hair and play Itsy Bitsy Spider! William is joy personified and we will be forever grateful to everyone at Seattle Children’s who played a part in giving us our little boy back. Dr. Anthony Avellino is William’s neurosurgeon and we trust him so much we are putting our plans to move on hold so William can stay under his care for the next 5 years or so. William is also under the care of a pediatric neurologist Dr. Stephen Glass who is also excellent and he sees Judy Simmons, a neurodevelopmental therapist at Children’s Therapy of Woodinville once a week. If you want the complete unabridged story on William, check out his blog (short for web log) at loripaul.blogspot.com or contact firstname.lastname@example.org for more information.