Livia is 8 years old now. She is outgoing, smart, endlessly curious about the world and doesn’t have enough fingers to count all the professions she intends to have as a grown up! But she also has significant experience with the bravery and the quick lessons beyond her age that come with hydrocephalus.
She was born early due to preeclampsia. A regular checkup that I entered feeling good lead us unexpectedly to labor and delivery. My preeclampsia was severe and my little one was found to be doing very poorly when we got to the hospital. An emergency C-section was required as they did not believe she would survive birth. I can’t describe the fear that her dad and I felt that day as we looked into that deep unknown of what would be for our little one. But she opened her eyes at birth, needed very little oxygen and started to improve in the world.
She was born 2lb 12 oz and had the expected complications of prematurity. She had a very serious bout of digestive issues that looked to be heading toward intestinal necrolitis and I remember the neonatologist saying if we could get her through that she would survive. And then her brain hemorrhage was discovered. Her platelets were low and in an attempt to discover why they discovered the hemorrhage. All those cells were traveling to the bleed.
We stayed in the NICU 3 months. Her biggest challenges after resolving digestion were developing the stamina to eat enough and seeing what resulted from her brain bleed. Her hemorrhage was grade 4 – the most severe. The long term implications of this are her hemiplegic CP and her hydrocephalus.
Our big girl was very lethargic in those 3 months pre-shunt – hence the struggle to feed and to exit that darn hospital. Scans and prep for possible surgery were a common experience for my sweet girl in the NICU. Many a time my brand new mama heart was broken by having to withhold food for a few hours in preparation for brain surgery just to find the pre-surgery scan showed now wasn’t the time. In the end she grew stronger and was released from the hospital without shunt placement. We were home only a week when at last neurosurgery deemed it was time.
Brain surgery is scary stuff. A new baby is scary stuff. 3 months in the NICU and spitting in the face of death are all scary stuff. Together they are absolutely petrifying. And the baby at the center of all of that has been an absolute warrior. I can remember all the details of that operating hallway as I passed my sweet Livia off to the OR nurses. Surgery went well and they placed her shunt.
Livia’s shunt placement allowed her to gain energy, grow and meet the challenges thrown her way. My big girl did have significant medical interventions and developmental needs in her early years from her traumatic entry into the world, however. Our path as a family has been very different from many others we know. Her early years were marked by very involved therapies, surgeries and new medical complications discovered along the way. My daughter’s infancy and toddler experiences were vastly different from those of most of her peers. She has spent hours working unbelievably hard in therapies and helping her body to do things others take for granted. But because of this I cannot stress enough the power of early intervention. She has and continues to work so hard and is now physically independent, thriving and excelling in many ways.
Livia’s hydrocephalus and shunt treatment have been her biggest challenges in life and our biggest challenge as a family. Despite the initial medical optimism we were given that her body would eventually process the fluid, taking over for the shunt, this did not happen and in fact she has had 3 shunt failures thus far. Each having different symptoms but none less gruesome and tiring for her than the last. She has been further challenged by a revision where bleeding was a complication and which changed her foot strike significantly enough to require orthopedic surgery. Sudden shunt failure symptoms off hours have meant emergency room visits which may or may not lead to surgery and the fear of further complications from subsequent brain surgeries are petrifying. We have also discovered irreversible optic nerve damage from hydrocephalus, a risk we were not even aware of us as newbies on this path. Sudden weather changes are hard on her, as can be heat. Her last shunt failure gave us a glimmer of hope that perhaps her body could take over and she could live shunt free – but ended in indescribable pain for her as the attempt failed and the whole system had to be put back in. And of course the psychological impact from all of this weigh greatly on such a little life thrown into such big and painful experiences outside of her control. The pain my husband and I feel as parents that our sweet gift must experience such indescribably challenging struggle and pain can’t be placed into words. Just imagine how my big girl must feel! She has handled her challenges with such strength and resiliency, so much beyond what we adults often find ourselves capable.
All of this is why my family will be walking in the 2017 Charlotte WALK to End Hydrocephalus. Our big Liv is only one of many who have had similar experiences as a result of hydrocephalus. Her surgery count is actually quite small compared to others but facing a future of waiting for the next surprise brain surgery is not acceptable. We need to fund efforts to find a solution or a cure for these hydro warriors
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