Mom to Rosalia Evelyn
December 28th, 2010 – July 7th, 2011
Lincoln Park, Michigan
It took my husband Jeff and I three years to start our family. We finally gave up and said we would be great Aunts and Uncles. After coming home from a family trip to Germany to meet my cousins for the first time we found out that we came home with more than pictures and great memories. I was pregnant! We were so happy. The first couple of months were great. No morning sickness, cravings, etc. At 20 weeks I went into my OBs office for my ultrasound, I had a scheduled appointment with the doctor afterwards…
My husband and I were told that our baby had a heart defect. We were sent to a specialist who continued to explain to us that she had a couple of holes in her heart and he would have to monitor me every week to be able to diagnose the defect. He diagnosed her with Truncus Arteriosis, a rare form of congenital heart disease that presents at birth. In this condition, the embryological structure known as the truncus arteriosus fails to properly divide into the pulmonary artery and aorta. (Wikipedia).
For the next 19 weeks we educated ourselves and prepared for our baby girl. We scheduled a ceasarian-section at 39 weeks. The plan was for her to be born and stabilize her. After about 48 hours they would transfer to DMC’s Children’s Hospital where she would have her surgery. The doctor told us she would probably be in the hospital for at least a month, but then would go home and be fine until around age 5 where she would have to have another surgery.
Rosalia Evelyn was born December 28, 2010 at 7lbs 10oz, 20.5 inches long. She had dark brown hair except for on the sides, it was auburn. Because of her heart defect she went straight to the NICU with Jeff while I was to go to my recovery room. On the way to my room my nurse wheeled me into the NICU. I got to hold her little hand. So small and tender. The cardiologist ran some tests and then came to see my husband and I and discuss his findings. I remember him coming into the room and looking at me. He sat down with us and told us that the diagnosis was incorrect, that her actual defect(s) were rare and we didn’t have a lot of time. They needed to transfer her to Children’s Hospital in Detroit now. I hadn’t even seen her for 2 minutes and they wanted to take her away. We asked him “how rare” was it and he told us ONE IN A MILLION. The transfer team arrived and my husband arranged for them to bring her to me before they left. I got to hold my sweet Rosalia for about 5 minutes before they took her to the other hospital.
The defects that she had were all common in babies if they were diagnosed as one defect. But since she had six defects together that is what makes it one in a million. The defects were : Pulmonary Atresia, Hypoplastic left ventricle, Transposition of the Great Arteries, Mesocardia, Atrial Septal Defect, and Ventricular Septal Defect. With all of this said the new plan was for her to go through a series of three surgeries. The first one was on January 12, 2011. She was only 15 days old, it went great! We called her “Our Little Fighter”. The doctors told us she would probably be in the hospital for 2 weeks, we told ourselves 3 weeks. On the 5th day after her surgery her nurse called us at home and told us that we needed to bring the car seat up. We asked why and she said because she was going home the next day! Day 6! We couldn’t believe it, we were finally going to bring baby home!
Our lives were normal, besides the weekly doctor visits, and occasional tests. We baptized her on May 14th, what a joyous event. Since her immune system was weak we waited until it was nicer out. The next surgery was scheduled for July 6th. We brought her in the day before to do all the pre op testing, and then brought her back the next morning for surgery. I can still remember how I felt just waiting for the surgery to be over. My husband, in-laws, mom, and close friend were waiting from 7:30am until around 5:00pm. We were there longer than the receptionist. Our surgeon came out and said the surgery went great and that we could go and see her. She was so quiet and still. The nurse said she would be coming out of the anesthesia soon. We let her Godparents see her and Grandma and Grandpa too. Then sent them home so we could spend some time with her. The doctors did their rounds and told us that it would be a boring night, just hanging out until she wakes up and that they would give her some medicine to keep her sleepy. Jeff and I decided to go home around 8:00pm. We kissed her goodnight and headed home. Little did we know that would be the last time we would kiss her goodnight. At around 1:00am we got a phone call at home. It was her nurse. She said something was wrong and it didn’t look good. They needed us to come up to the hospital right away.
When we got to her room they were performing CPR. The attending came and talked to us and told us that her blood pressure started to drop around 9:00pm, but they couldn’t keep it steady. She wasn’t responding to any of the medications. They called the surgeon in and asked us if they could open her back up to see if there were any clots or leaks around her heart. When they did they didn’t find anything. By then they said she hadn’t had a pulse/blood pressure for 80 minutes and they would have to “call it”. I will never forget those words.
At 2:38am I lost my baby girl.
An autopsy was done and nothing was found. They have no idea what went wrong…
It’s been 1 month and 1 week and my house is quiet. I have no routine and I am still waiting for her to cry.
Cori can be contacted at firstname.lastname@example.org