Emily’s Story

O Warrior Stories

Written by: Jill Grabenbauer

My name is Jill Grabenbauer and my child is now 14 years old. She was born in Austin, Texas in 2009. I knew from the 20 week scan that my child was going to have an atypical journey in life. I lived an hour and half away from Austin and had scans every two weeks. The doctor did an amniocentesis and thank the good Lord, all she had was an omphalocele. Once she was born, my daughter stayed at Austin Texas’s new Dell Children’s Hospital. She was extremely well cared for over her 45 day stay. She had two holes in her heart, and went into surgery the morning after she was born to correct the Omphalocele. The doctor said it was the smallest large omphalocele they had seen. Her intestines and half of her liver were involved. There were many different tests done while she was in the hospital. She had barium swallows and blood draws frequently. There were not a lot of outside resources for her feeding issues so I went to Babies R Us and bought a lot of different nipples for bottles and different types of bottles for the hospital to try on her. When she left, the hospital asked if I wanted the extra items I had purchased. I told them that if it could help any other child in the NICU to consider it a donation to their department because I was so grateful to find something that worked for my daughter and I wanted to make it easier for someone else if possible.

My daughter had a sterile abscess at around two months of age. The dr. drained and placed a wick. It was very hard not to be afraid of removing the wick and watching the hole heal on it’s own. May daughter saw a pediatric cardiologist until she was two years old. At three years old, we had moved to Ohio and had a very hard time getting a follow up appointment in Cleveland. It was not required, but it was recommended that she be seen and , when she was it was determined that there was not even an indication of any murmur or heart problem. Since her follow up with cardiology, life for her has been fairly normal. She does complain about shortness of breath sometimes and has back pain, but for the most part she is generally healthy.

I am hopeful that by sharing my story and joining this group perhaps I will be able to hear more about children in their teens and how omphaloceles have effected their lives.

There seems to be very little information on what to expect later in life and I have questions about what could be potential problem areas for her in her teens. Thank you for listening.