In June of 2007, I was 28 weeks pregnant with a little boy. I went in to my OB for a follow-up routine ultra-sound. When I had gone at 20 weeks, baby boy was stubborn and they were unable to get a good look at his heart. They had no cause for concern but she said that she wanted to be extra sure and had us come back 8 weeks later.
I was excited to get a glimpse of my little boy again. The ultrasound tech started making lots of measurements and became quiet. She stood up and said "Ok I want you to know I'm seeing lots of things that aren't good. I'm going to go get the doctor right now and we'll be back as soon as possible."
I burst into tears. So glad that Bart was able to make it with me that day. We sat in silence waiting for them to come back in and say it was a mistake.
The doctor spoke with us frankly. Our baby had multiple masses in his heart. He had hydrops fetalis...I had polyhydraminos and the little baby's abdomen was filling with lots of fluid indicating that he may have heart failure. He explained "Is this
always fatal? No. Is this very serious? Yes."
He set us up an appointment with an excellent perinatologist for an emergency appointment the next morning so our questions could be answered. We went home with the prognosis that our child had a 5-10% chance of surviving birth.
We panicked knowing we were packing up our apartment to move from Utah to California in one week. What about doctors? Are we doing the right thing? All so surreal that the little baby we were excited to hold would likely not have a beating heart when we held him.
When I got home, I immediately googled images for hydrops fetalis. As the images appeared on the screen I wasn't prepared for what I was to see. I clicked out of my browser and broke down in tears, searching for peace.
When we went to the perinatologist, he measured 4 cardiac rhabdomyoma tumors in his heart. The fluid in his abdomen was substantial. We were told that in the small 5-10% chance our child would live to birth, he likely wouldn't live long. And in the event that he lived for a while, he had a 75% chance or greater to have a disease called tuberous sclerosis.
500 miracles and doctors later, our son is 25 months old. He is seen by a few clinics for follow-ups but the organs in his body have been functioning well on their own since he was a few months old. He has had no seizures and shows no indication otherwise of tuberous sclerosis.
On Wednesday we drove down to Little Rock to be seen by the cardiology department in the Arkansas Children's Hospital.
The tumors are gone.The doctors indicated they would never know that he had history of cardiac rhabdomyomas if they didn't have his old images and doctors reports from California.
This week we celebrate with so much gratitude the tender mercies of God. This little guy is my sunshine.