I was a patient at Deaconess Hospital where I had my daughter via scheduled C-section in hopes to meet her alive. I found out at 11 weeks she would have a fatal diagnosis. She was a twin originally as we lost our son early on.  So needless to say, it has been a LONG pregnancy and journey for us. 

When H was born, we finally got to meet my daughter (alive) and it was the most magical, beautiful, and peaceful day of my life all because of Deaconess. My daughter was diagnosed with Anencephaly which means she has no skull. It is a Nuero tube defect that affects 1 in 5,000. 

Unfortunately, we knew she would pass away shortly after birth as she had zero chance at life. We just did not know how long we might have with her once she was born. Every second was valuable to us, and we cherished that time. No two stories with a baby who has anencephaly are the same. My husband and I are extremely lucky as we not only got to meet her alive, but we got 15.5 hours with our baby girl.

We got moved to the Mother Baby and that is when we met Cassidy Emerson who was our RN for the night. To say she was AMAZING is an understatement. She was so sweet I cannot even describe it. She was friendly, helpful, compassionate, kindhearted, and loving, and was available for our every need that evening! 

Around midnight we called Cassidy in as I felt like our daughter’s breathing pattern was changing. Cassidy confirmed that it was in fact different, and we should watch her closely. So, we did just that. Throughout the next 4 hours, we snuggled our H extra tight as we knew the end was near but did not exactly know when that time was. 

Throughout the night we called Cassidy in our room what I felt like was 24-7 as she checked on us constantly, listened to H’s heartbeat, suctioned her saliva from her mouth so she could breathe better, checked on her oxygen and again tended to our every need with extra TLC. At one point she got us Gatorade which was such a nice treat, as funny as that may sound. It is really the little things in life sometimes!

We decided to close our eyes around 3:30 am for just a few. I woke up to a strange cry around 4:20 that H made. I then began talking to her and adjusting her oxygen as I felt like she was struggling hard to breathe. Nothing helped unfortunately and she took her last breath shortly after that. I called in Cassidy to confirm. She checked for a heartbeat, but she did not hear anything and stated we need to give it at least a full minute. We waited the minute and sure enough, she confirmed there was no longer a heartbeat. She went to Heaven at 4:27 am. 

We knew the end was near but let me tell you as a parent you are never ready for this. I have never felt more intense pain in ALL OF MY LIFE as I screamed and cried so hard as my baby girl had just died. My husband and I were in utter shock and completely devastated as we cried lots of tears. 

Cassidy called the appropriate people into the room and made sure to get us the cuddle cot. She also made sure to contact the Chaplin and got everything handled as soon as possible. After that, she came and sat at my bedside and asked if she could pray for us as her eyes swelled with tears. She was so compassionate and kind we just felt like she was family to us. We all prayed together and that was comforting and extremely sweet of her to do that. 

She was extremely patient, kind, beyond helpful, and all-around the perfect nurse for us that evening! She was so sweet that she came in on her day off to give us coffee and breakfast the following day! 

I know our situation is extremely unique and complex but that did not stop your hospital staff one bit. They rose to the occasion and made our daughter’s life so very special. They made her life count and offered so much support and love we are forever grateful to Deaconess. 

You should be so proud of the team you have at Deaconess! Thank you is not enough for all that you did to make this the best day of my life!! 

Thank you from the bottom of my heart!