When I was @20 weeks pregnant with identical twin girls, I found out that one of my twins had passed away and that my surviving twin was in distress. I was told by the perinatologist that she would not survive 24 hours. A week later, it was found that my daughter was in fact still alive, but she did not come out unscathe. My husband and I were told at 21 weeks that Julie Anne had fluid on her brain-hydrocephalus. I had never heard the word before and had no idea what that meant. I was immediately sent to have a fetal MRI done. The results showed our daughter's ventricles were definitely enlarged, but that she had also suffered a stroke when her twin sister died.
We were told that we needed to abort right away. The docs were 99% sure that our daughter, if carried to term, would either die at birth, be a vegetable, or have no quality of life. We were told our daughter would never leave the NICU. The thought of aborting our daughter was out of the question. The doctors tried everything to get us to terminate going as far to tell us that this was not the baby we wanted.
When we first found out about the hydro, our daughter's vents were measuring 17 and 19mm. We were told they would get huge. Week after week though, each ultrasound showed that her ventricles had stabilized. We were getting so excited and hoping that she would prove the doctors wrong. No matter what though, we loved her and were committed to whatever may happen.
When Julie Anne was born, she was eating and breathing on her own. We were able to hold her and love on her. She wasn't whisked off to the NICU. She was taken to the level 2 nursery until she could be evaluated by her neurologist, but after a few hours she was back with us.
We took Julie Anne home as soon as I was recovered from my c-section. Unfortunately, after going home, her head size took off. We went back to the neurologist and her head size had gone off the charts. She was sent for an ultrasound and all I could see was big black spaces in her head. Right away I knew that this wasn't good.
We went directly to the neurosurgeon and he stated that the ultrasound showed that in addition to the stroke, Julie Anne also had a huge Arachnoid Cyst on the back of her brain. He felt that instead of going straight to the shunt, he would try performing an ETV (Endoscopic Third Ventriculostomy) and fennestrating the cyst. This was performed and everything seemed to be working.
After a week at home, we noticed something leaking from Julie Anne's ETV wound. It was CSF. We headed back to the emergency room where the neurosurgeon was waiting for us. She was immediately admitted to start antibiotics and to reinforce the sutures around the ETV. An MRI showed that the fluid was flowing through the ETV hole so now it was a waiting game to see if she was going to leak again.
After 4 days in the hospital and no leakage, Julie Anne was going to be discharged. I was on my way to take our other kids to school when my husband called me to say that he was getting Julie Anne dressed to leave the hospital when he laid her down flat and she started leaking again. When I got back to the hospital, the neurosurgeon was waiting for me to explain to us that Julie Anne would require a shunt. I broke down when I heard the words. I had prepared myself I thought for so many months that she would have to have a shunt, but when we were right there discussing with the doctor that she would need one, I was overwhelmed with emotion.
I knew a shunt meant a life-time of constant doctor visits and possible problems. Two months after her shunt placement, Julie Anne had a complete revision. I kept feeling something in her head around her shunt that felt weird and with her increased fussiness, I took her to the neurosurgeon. An x-ray showed the tubing from the shunt had migrated from her stomach into her head and had coiled around her reservoir.
She has now been surgery-free for 10 months. She's 13 months old and is doing great. We are still working on her walking due to damage she suffered to her left side from her stroke. She is one of the happiest babies ever. She brings so much joy to our lives and I'm thankful everyday that we didn't listen to the doctors to terminate her. She has proved them all wrong!