I will never forget the day our life was changed forever….I was 36 weeks pregnant, sitting in Robert Wood Johnson Hospital for one of my final ultrasound appointments. Her dad and I were there following up on Genavieve’s abnormal bladder growth. We sat there anxious as we already knew I was high risk. By this time I felt like a pro. I noticed her bladder on the screen and it looked as if it had formed normally. I remember the tech taking her time going over and over my belly, but not answering any of my questions. After a while, the tech excused herself and left the room. A few minutes later she came back in the room with a doctor and a Rutgers student. The doctor proceeded to tell us that he had good and bad news. First, the good news he said that our daughter’s bladder had developed normally. Then, the bad news he said we had way more serious problems. He told us our Genavieve had a brain hemorrhage and large amounts of fluid in her brain. I collapsed…I felt like I was hit by a truck…I felt scared…Scared for her life and our future.
Within two hours I was on the operating table at St Peters Hospital with an emergency C-section. I delivered my beautiful daughter, Genavieve Haven Medina weighing 4lb 3oz and measuring 17 inches long. However, as quickly as I had just delivered her was as quick as the doctors took her away from me. She was immediately taken downstairs to the Neonatal Intensive Care Unit (NICU).
On top of the brain damage and health issues she was dealing with, we were told that Genavieve had a blood platelet count of 8,000 (the norm being 100,000). By the next day, she had an emergency blood platelet transfusion. On her 9th day of life, she had her first brain surgery. During this surgery, she had a VP shunt placed in her head to drain the extra cerebral fluid inside of her brain. Genavieve also had many MRI’s and cat scans. From these tests, the doctors discovered she also had a very large cyst on the left side of her brain. She had suffered severe brain damage from the hemorrhage while in utero. Genavieve was given a feeding tube as she was having trouble taking the bottle and eating.
Genavieve remained in the NICU for two months. After two months, Genavieve was transferred to Children’s Specialized Hospital, also located in New Brunswick, NJ. She was still having trouble eating which resulted in her not gaining the proper weight. At this point, the doctors were not comfortable sending her home and wanted to keep a closer eye on her. At CSH she received speech, occupational, and physical therapy. By receiving daily therapy services, Genavieve started making progress. In May of 2013, Genavieve was finally released and sent home to live with her father and I. In December of 2013, after being home for a few months, Genavieve’s shunt failed and she was sent in for another surgery. Since this surgery her health has remained well and stable. She is currently working with Early Intervention which provides speech, occupational, and physical therapy, and a DI teacher. In addition, we work with the Commission for the Blind and Visually Impaired. Every day is a challenge, but as a family we have been able to fight through the setbacks. Genavieve is delayed physically and has suffered major vision problems due to the brain damage from the bleeding.
She continues to fight through her obstacles each and every day. Taking care of a disabled child is a full time job in itself, and the most rewarding job. We are extremely thankful and blessed to have the Shannon Daley Memorial Fund choose us as any help is truly appreciated from the bottom of our hearts.