Annelise, 18 months
In 2015 during an emergency 18 week scan after sustaining a blow to my tummy, the technician had a very worried look on her face. When the Dr. finally came in the room he handed me a piece of paper and said “the good news is there is no placental rupture, but your baby has severe bilateral ventricle dilation and I urge you to be seen at the Lois Hole Center for women and high risk birth”. The next 2 weeks were brutal waiting to get into the fetal medicine clinic. It was there my fears went from bad to worse. We were told to consider termination as the case was so bad our daughter could be born in vegetative state or not live to see her birth. I had way too much faith in my daughter and refused the procedure.
Fast forward to 36 weeks, Anneliese came into this world one day before my scheduled induction.Â Born with the NICU staff ready to swift her away she was severely jaundice and was struggling to breath. She had a CT scan, MRl and ultrasound which confirmed she had aqueductal stenosis and a rupture in a membrane in the ventricles of her brain. Â We weren’t aware until 15 months of age that she was also born with cerebral palsy which was caused from the severe pressure her brain was under while in utero.
Anneliese had her first VP shunt placed at 5 days old. Surgery went well but Anneliese was still having issues breathing and eating. After a very scary 3 week NICU stay with daily Brady’s I was thrilled to have her home. But this joy was short lived. At 6 weeks old not only did Anneliese’s VP shunt fail, she also started to get an infection in the incision on her tummy. We were admitted and Anneliese went for surgery number 2, they replaced the entire shunt and cleared up the infection. On arrival home I received a call from Alberta Health services with some very scary news. We had come into contact with the red measels while in the emergency waiting room. We were on complete quarantine in my house for 3 weeks. No follow up visits, and during this time Anneliese’s incision beside the shunt valve became extremely infected.
By the time the quarantine was lifted it was too late, at 10 weeks old she was re admitted, the shunt was completely taken out and she was hooked up to an EVD and in iCU for 10 days. I was so relived the day our Dr. came in and said the infection was cleared and he was taking Anneliese back to the OR to put her shunt back in. Â 3 days later we were home. For 10 whole months there were no complications. Every MRI showed her shunt was working, that is until she turned 1…. I noticed her fontonell seemed “full” so I called our neurosurgery nurse practitioner and she advised me not to feed Anneliese and bring her in for a shunt series and MRI…. Her ventricles were back up to the size they were at birth. Heart broken only 2 weeks after her 1st birthday and on my brothers birthday Anneliese was taken back to the OR for her 5th surgery.
Anneliese is now 18 months old. No revisions since her 5th surgery in February, and I am pleased to report her Dr just bumped her down to a 6 month appoinment regimen!.
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 posted on our website and through social media. 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.