Baby Utz Hydrocephalus Fund

As many of our close friends and family may already know, Ashlee and I have already started to embark on a difficult journey as we welcome our first baby into the world. We know they say you can never really be prepared to be parents, but we have felt for a long time that we were more than ready. However, nothing could prepare us for all of the hurdles we were about to face. At our second Ultrasound December 16th, we went in excited to see our little baby and decided we did not want to find out what we were having. We were overjoyed seeing our perfect little baby on the screen. Everything seemed perfect. As we finished up, the Ultrasound tech told us that she was going to leave the gel on Ashlee’s stomach just in case the Doctor wanted to take a look when she came into see us. The minute the tech left the room, Ashlee looked at me and said “I think somethings wrong.” I however didn’t believe anything was wrong, we had both just seen our perfect little baby with a healthy heartbeat kicking and moving all over the screen. Moments later, we were greeted by a Doctor. She introduced herself and spoke as if she was reading from a textbook. Everything she said was in one tone. The Doctor told us that our baby was not perfect our baby was being diagnosed with Mild Ventriculomegaly. She told us about the amount of damage that can be caused by this diagnosis and that there was no telling what the outcome would be for us. We were then told we were going to be faced with a few difficult choices. She mentioned amniocentesis, Genome testing and several other types of test, she also mentioned termination. Everything was terrifying and we really had no idea what she was saying because we were both in shock. Moments later, someone else had entered the room stating she was a counselor she handed us pamphlets and talked in a concerned voice. We would only later learn that she was a genetic counselor. That was one of the hardest days of my life.
Fast forward 1 Fetal MRI, 3 blood test, 5 Ultrasounds, and 10 Doctors visits later and here we are. What we have learned is that we are having a little girl, and her diagnosis has changed for the worse. We were told at an Ultrasound on January 13th, that her brain ventricles had dilated to the point that our diagnosis was now hydrocephalus. What this means is that there is a lot more cerebral spinal fluid in her ventricles than there should be, and this can cause serious brain damage but we will not know what type of setbacks we are going to face until she gets here. We do know that her head is currently 3 weeks larger than the rest of her body because of the swelling in the brain pressing on her skull. We also know that we will be delivering by C-section on May 4th. After she is born, she will face her first brain surgery to place a shunt to drain fluid from her brain. This will require 2-4 weeks in the NICU at Nationwide Children’s hospital. Once she is discharged and cleared for travel, we will then be headed to Duke University Medical Hospital in North Carolina for a cord blood transfusion. Duke is the only place in the world doing this experimental treatment to help treat babies with Hydrocephalus and other types of brain damage we feel so fortunate that it is only 7 hours away; however, this very costly treatment is not covered by our insurance. Despite the cost Ashlee and I have decided that we are willing to do whatever it takes to provide our little girl with the best quality of life that we can give her.
We had a very hard time from the beginning sharing everything that we have gone through, and an even harder time reaching out for help. We don’t want people to feel any obligation we appreciate any help whether it be financial for her medical bills, or prayers for healing and strength. We would appreciate you sharing our story.
Baby Girl Utz 3/17/2017