Jane

Our story began on May 5, 2004, when our daughter was born. Shortly after delivery, the nurses reported that the baby's oxygen saturation level was only in the 70s instead of 100, and her hands and feet were blue. She was immediately taken to the ICU and, after several respiratory interventions were ineffective, an echocardiogram was performed and transposition of the great arteries (TGA) was diagnosed. My husband and I were devastated. We hadn't decided on a name yet, but then wanted to name her right away. We decided on Jane because it means "God's gracious gift." Little did we know how appropriate that name would be in the weeks to come. It wasn't until an ICU Fellow explained Jane's condition and said it was "fixable" that we were able to breathe. We followed Jane in the ambulance a few hours later as she was transferred to Children's Memorial Hospital in Chicago.

Jane had her arterial switch when she was 8 days old. I remember holding her that morning, tubes and all, and she looked right into my eyes. I wasn't sure if that would be the last time I saw her, but I felt so grateful for just that moment. Jane's surgery was long and complicated. She was on and off the heart-lung bypass machine three times. At one point, the surgeons had to drop her body temperature and pack her head with ice to help preserve her brain while they switched out a clotted machine. Her tiny coronary arteries were kinked, which the doctors did not know until they were in there. The updates we received from the nurses every couple of hours seemed to get worse. We finally had to go and wait in a different area because the waiting room was closing. Finally, at 10:30 that night, one of the surgeons came out and told us they were finished, she had made it and the next 48 hours would be critical. We got a glimpse of Jane shortly thereafter as she was wheeled into recovery and she looked so pink, which was reassuring. When we were able to finally go to her, she was swollen and hooked up to so many things, she didn't look real. Jane's chest was left open for 5 days because she was too puffy, so she had to be paralyzed during that time. She slowly got stronger, but not without numerous complications. Her kidneys shut down for 11 days; she had two episodes of life-threatening SVTs, developed a pneumothorax, and was intubated for a month.

Considering we were told early in the pregnancy that the baby would not survive in utero, Jane is truly a gift, not to mention a fighter like we've never seen. Her ordeal was horrifying and overwhelming. It was utterly heartbreaking to see a baby endure all the pain and procedures Jane had to experience from the minute she came into this world. Jane still has some kidney issues and swallowing problems, but we're hoping they will resolve and that her heart will stay strong. She is now going on 2 years old and just wants to do everything her big brother and sister do. She has a smile that lights up the room.

The one thing that my husband and I take away from our journey with Jane is that for some reason she survived. Her heart defect really was "fixable," and some are much more serious or even fatal. We want to help other families affected by this and do our small part in raising awareness and funding for future research. Our lives were forever touched by the dedicated doctors and nurses who became like family during our 10-week stay at Children's. We were one of the lucky ones and hope that neither we, nor our friends and family, ever forget that feeling of despair we had in those early days. For it is that feeling that keeps us grounded and focused on what is really important in life.

—Story was written by her mom

Thumbnail: