In The Beginning
When I was pregnant with Faith, she struggled in utero. Halfway through the pregnancy, doctors noticed her organs were enlarging. Most concerning was her heart. She had a large ventricle septal defect (VSD). Knowing she would ultimately need open heart surgery, they kept a close watch on her progress. After countless tests and several ultra sounds, they realized that one side of her heart was growing, filling with fluid. Other organs were filling with fluid and everyone grew more concerned. The specialists ultimately determined that something had to be done, if we were to save her.
We decided on a somewhat, experimental procedure for Faith, while she was still in utero. They suggested an intrauterine transfusion, or fetal blood transfusion, for Faith, to replace her red blood cells, hoping it would allow the fluid and swelling to go down. So, with the fear of losing my baby, we signed off on dozens of papers, basically saying we wouldn’t sue anyone if it all went terribly wrong. My life, as well as Faith’s was hanging in the balance. It was such an uncommon practice that they used us as a medical example of training for medical students. The room was filled with about a dozen people. Including us, there was one nurse was for me, monitoring all my vitals, the technician performing the ultrasound to see Faith, and yet another assistant for the surgeon, an anesthesiologist, a lab runner and about 5 medical students, complete with their clipboards and notepads.
The procedure began with the doctor warning the medical students that they must not touch my gurney, bump into anything or speak. As he inserted the 10 inch needle into my pregnant belly, aiming at Faith’s umbilical cord, a curious med student came too close and bumped into me. The angry look from the surgeon and fearful looks on the nurses’ faces made my heart skip a beat and my eyes fill with tears. Thankfully, no damage was done and he proceeded to drive the needle in, watching the ultra sound screen to guide the location. I had to be awake throughout the entire procedure and lay perfectly still. One fraction of a centimeter could have proved fatal for Faith. He entered into the umbilical cord to inject medicine to put Faith to sleep, in order to do the blood transfusion. If she had moved at all during that first needle, it would have been life threatening. God steadied the doctors hand and kept Faith still. Phase one was complete.
Once Faith was asleep, the chaos ensued. They had to act fast, as Faith would not be asleep long. Another long needle was inserted into my pregnant belly to draw out her blood, the runner had to literally run down the stairs, so as not to risk being delayed by elevators unpredictable timing. He ran the blood to the lab to determine red blood cells and amount. The whole time the surgeon and I had to remain perfectly still as he still had two 10 inch needles inside me that had to remain in position. I was praying the entire time and watching the doctor. He was calm, focused and very still as sweat dripped down his face, his hands never moving at all. The room was silent.
As the runner returned, spouted off numbers, the assistants, technicians and nurses went back into action. The doctor injected Faith blood back into her cord and carefully removed the needles. The procedure was successful. And then we waited.
We were monitored for a while. The ultrasound showed Faith doing well. My vitals were all within range. So we were released. We went home grateful that we both pulled through and praying that the procedure would reduce the swelling of her organs.
The following week, ultrasounds showed that it was in-fact successful and had reduced the swelling. However, two months later the swelling of her organs returned and the doctors opted to do an emergency c-section, instead of repeating the transfusion procedure. She had 8 more weeks of the pregnancy to go, but they thought once she was born the fluid would naturally go down, if she stayed in utero she may not make it. I was terrified.
After the c-section, Faith remained in the NICU for 6 long, worrisome weeks. The doctors said her organs were of normal size but she still needed open heart surgery, to repair the large hole in her heart. She was on a feeding tube and heart medication for 5 months. She was very lethargic. Our home become a mock up of the neonatal unit with feeding tubes, pumps and medicine around the clock.
It finally came time for her open heart surgery. As we met with the doctor, prior to surgery, everything he explained was a warped distant, whisper. I couldn’t stop staring at his hands. He was a large man, about 6’4″ and 250 lbs. and I remember noticing how large his hands were. I couldn’t stop wondering “how on earth could those large hands perform a precise, intricate surgery on my tiny, premature baby’s apricot-sized heart?!”
When it was time, we rode up a private elevator to the operating room entrance. I held Faith close, against my heart, praying that our savior would protect and save my baby, guide the hands of the surgeon and ultimately heal her heart. The elevator doors opened, we were only allowed to step off far enough to give Faith to the nurse. Handing over my baby in that moment was the hardest thing I ever had to do. We stepped back into the elevator and had to wait.
With my family all in the waiting room, we went there to be together until Faith’s surgery was done. I never sat even a minute. I paced the hallway outside of the waiting room saying the rosary. Before I could even finish the third decade, it was over. The nurse came in and said it was successful, the hole in her heart was successfully repaired and Faith was doing well! “Praise God! Thank you Jesus!” were my very first thoughts.
Faith was home 3 days later, thriving, happy and healthy. From that day forward, she never needed medication again and to this day her heart is strong. It was as if she was reborn, finally an active, alert baby. We felt so very blessed and grateful.
Keep in Touch
Have you and your child been faced with medical issues? Want to share your story? Drop your comments below. I’d love to hear about you and your child. I share our stories with you, so that you may find comfort in knowing that you are not alone. Remember, every child and every situation is different. Have faith! Stay strong. Stay well!