Isaac was born at 25 weeks gestation. At his third day of life, we received news no parent wants to hear. Isaac had a bilateral grade III intraventricular hemorrhage. Because Isaac was too small for a common shunt surgery, a Ventricular Access Device (VAD) was placed temporarily. However, a few days later, physicians discovered Isaac was battling bacterial meningitis so an emergency surgery was performed to remove the VAD implant and replace it with an External Ventricular Drain (EVD) until the infection cleared. This also meant we could no longer hold him until the EVD was removed. The day following surgery, Isaac experienced a bout of seizures and was given phenobarbital. The neonatologists and pediatric neurologist kept bracing us for a child with limited abilities, a child that may require lifelong assistance and supports.
Fast forward, Isaac was doing better in the NICU and gained the weight needed for VP Shunt placement before his 2nd month birthday. After the shunt, everything appeared to be going in Isaac’s favor. He was eating better, breathing better, doing a lot better overall. After 99 days in the NICU we were getting ready to go home, until an MRI revealed a cyst in his brain causing a midline shift. Instead of going home, we were preparing for surgery the next day – shunt revision #1. A few days later, on day 104, Isaac was discharged and we were finally on our way home.
Isaac was doing great at home, eating well, sleeping well and thriving. A few weeks later, I became concerned about a small bump on Isaac’s head. After visiting with his pediatrician, who ordered an MRI, we discovered one of the cysts grew so large, the left hemisphere of Isaac’s brain was in his right hemisphere; that’s how badly the midline shift was this time. Now we were prepping for Isaac’s 2nd shunt revision and his 5th brain surgery, all before turning 5 months old. A second catheter was added to the shunt and this time it did the trick!
Isaac was attending a Pediatric Patient Extended Daycare (PPEC) facility during this time. PPEC are special care centers created for medically fragile children. As Isaac continued to do well in his health, even weaning off completely from phenobarbital and being discharged from the pediatric neurologist, he eventually exited out of PPEC. Isaac’s Occupational Therapist from PPEC mentioned he was ready to be enrolled in a regular daycare setting. Once he was enrolled in a new bilingual daycare setting, he was seen by an early interventionist weekly which was provided by the state’s early intervention program – Early Steps. Even she became very impressed with Isaac’s abilities, will and determination to persevere.
Fast forward, we celebrated two years of no brain surgeries! But then, something was discovered in Isaac’s follow-up MRI. This time they discovered cysts on Isaac’s spine, called a syrinx. The syrinx existed in all areas of his spine, from cervical, to thoracic and his lumbar system. A Suboccipital Craniotomy for Syrinx Decompression surgery was scheduled in June 2020, making this the 6th brain surgery Isaac underwent before his 3rd birthday. He came home two day after surgery.
We were told many things that our child may not be able to do. We were told, because of his brain bleeds and neurological history, he would have severe disabilities, mental handicaps and a high risk of death. Regardless of the prognosis, as Isaac’s parents, we were prepared to take on all challenges with a goal to provide our son the best quality of life. Instead, God gave us a tremendous amount of mercy. Today, Isaac has been meeting all his developmental milestones. He can run, laugh, dance, play instruments and more. He can also recite his alphabet, numbers, shapes and colors in two languages; in fact, Isaac is very fluent in English and Spanish.
He is doing everything his physicians classified as “rare.” But to us, he’s doing exactly everything he should be doing. I just wish I could have heard more stories like these while Isaac was in the NICU. It is very hard to find successful stories, ones with hope, from premature babies going through brain bleeds and hydrocephalus. That’s why I speak about his story locally, to let others know they are not alone in their stories and that hope does exist.
Tell us about your journey with hydrocephalus!
Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest regardless of their condition! Stories are reviewed by our staff and posted on our website and through social media. Stories should be no more than 800 words long. Submit your story today!
Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!
For questions, email: firstname.lastname@example.org with the subject line “Share Your Story”.
Become a Grassroots Advocate for Hydrocephalus today! Click here to join the Hydrocephalus Action Network.