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 intraventricular hemorrhage (“IVH”), or bleeding on his brain. As a result of the IVH, Declan developed Hydrocephalus.
In an effort to remove and control the flow of excess cerebral spinal fluid (“CSF”), underwent a series of spinal taps.
While the spinal taps provided some relief, they were unsuccessful in relieving the amount of CSF collecting in his brain. Still hoping to avoid the placement of a shunt and the lifelong complications that can accompany such a procedure, Declan underwent his first brain surgery for the placement of an “Ommaya Reservoir”. CSF was withdrawn from the reservoir in the hopes that enough would be removed, the impetus for the blockage would resolve and Declan’s body would be able to drain the fluid. Unfortunately, Declan’s little body was not able to continuously drain the CSF on his own and the placement of a shunt became necessary.
On December 27, 2010, Declan underwent his second brain surgery for the placement of a VP shunt. The VP shunt is programmable by magnet and allowed Declan’s Neurosurgeon to adjust the level at which the CSF is drained.
In April of 2011, Declan was diagnosed with severe to profound hearing loss. The loss of his hearing was most likely attributed to the many rounds of antibiotics which were administered to him throughout his time in the NICU in order to save his life. Eventually Declan was found to be a cochlear implant candidate. It was determined, however, that Declan could not receive a cochlear implant with his VP shunt in place due to the effect of the cochlear implant magnets on his VP shunt settings. So, in December of 2011, Declan underwent this third brain surgery to replace his VP shunt with a non-programmable shunt and, in January of 2012, Declan was able to receive his cochlear implant. In his first year and a half of life, Declan has undergone ten surgeries, including double hernia, Gtube/Nissen, Ommaya Reservoir, Shunt, Strabismus, Myringotomy, Shunt replacement and Cochlear Implant.
Due to the IVH and Hydrocephalus, Declan’s physical and cognitive development is uncertain and he faces a host of challenges. As is common with children with Hydrocephalus, Declan developed swallowing problems and is now 100% reliant on a Gtube to receive nutrition.
Declan has been through things that no baby or parents should ever have to experience. He has had to overcome numerous life threatening situations and, making it through those, now fights for his development. Further, he has not yet reached milestones that most babies achieve in their first year. Declan receives physical therapy, occupational therapy, hearing therapy, vision therapy and swallowing therapy weekly.