Congenital heart defects effect MUCH more than just the heart.
More than half of all babies born with a congenital heart defect will require at least one invasive surgery in their lifetime. Further, about half of all children with complex congenital heart defects will have neurological and developmental disabilities. Sadie had her “temporary” heart surgery six days after she was born. The purpose of this surgery was to create a temporary path for blood to flow from her heart to her lungs until Sadie was big enough for the open heart surgery that would repair her pulmonary valve and patch the large hole in her heart. This surgery would have been done around six months. We were told that life between the temporary and reparative surgeries would be, for lack of a better word, shitty. We would need to keep a close eye on her at home and there would be weekly trips to the cardiologist, but otherwise we were told to “treat her like a normal baby.”
After recovering very well from surgery, Sadie came home on the day before Thanksgiving. Six days later, we took her back to the hospital because she was looking cyanotic, or blue. This was due to low oxygen levels and they admitted her right away. We were scared, but we knew that once we got through the shitty six months before her open heart surgery, everything would be fine.
The day after Sadie was admitted, I was rocking with her in her room back in the Cardiac Care Unit, when a man from the hospital’s volunteer parent program came in and asked if he could share his daughter’s story with me. I do not remember his name, but I will always remember his face and the story he shared. This man’s daughter, Lauren, was 12. She had a different defect than Sadie. For the first two years of her life, Lauren was fed exclusively through a feeding tube. (This is not uncommon - many kids with CHDs have problems feeding and are fed through a feeding tube, sometimes for months or years.) Lauren had three open heart surgeries before she was two and was on oxygen until she was about three. Because it took about 30 minutes just to get Lauren and her portable oxygen tank loaded into the car, Lauren’s parents rarely took her out of the house apart from hospital and doctor’s visits. Her parents were also advised to keep Lauren away from other children and public places as much as possible, as the delicate systems of children with CHDs have a harder time fighting off common illnesses than normal kids. But things were better now that Lauren was older and through her last couple surgeries. Lauren’s dad told me about how excited Lauren had been to try out for cheerleading earlier in the year, but that would now have to be put on hold due to Lauren’s need for surgery to correct her extreme scoliosis. (Scoliosis is often found in kids with CHDs who have had several heart surgeries at a young age.) He told me about her learning disabilities and how behind she was in school due to her recent surgery. He told me that she didn’t have many friends or much of a social life - it was hard for her to keep up with her peers physically and she was tired a lot. He told me how he worried about his daughter and her future every second of every day.
I remember feeling terrible for Lauren, her dad and their family. I also remember feeling lucky that my daughter’s story would be different. My daughter was going to lead a normal life. But that normal life began to look more like a fantasy when a day later we were told that we would be going home with oxygen and a pulse oximeter. We would need to measure Sadie’s oxygen saturation levels at home and give her oxygen when her levels dipped. This was a far cry from our instruction to “treat her like a normal baby”, but the doctors assured us that this wasn’t out of the ordinary and was temporary until Sadie had her open heart surgery in a few months. As we loaded the car with the medical equipment and left the hospital with Sadie for the second time, we had no idea that in less than 48 hours our baby would be dead.