Scarlett Ava was born on January 31, 2013 weighing in at 5lbs 9oz. She was absolutely beautiful and appeared to be totally healthy. Two days after welcoming her into this world our lives were turned upside down. We thought our baby was perfectly healthy, but were devastated to find out she had a heart defect called Tetralogy of Fallot, and would need open heart surgery before her 1st birthday. There is no way to describe that terrible feeling that we had in that moment. Fortunately, Scarlett was considered a Pink Tet baby because she was born breathing on her own and we were able to take her home and care for her until she showed signs of cyanosis. Scarlett was gaining weight beautifully and seemed to be thriving, by 3 months old she weighed 11 pounds, which caused her oxygen to fall into dangerous levels. The cardiologist told us it was time to schedule her surgery. The only peace of mind I could give myself is that Scarlett needed this surgery in order to survive.
Scarlett’s surgery was scheduled 2 weeks later on May 13, 2013 at 7:00 a.m. Trying to stay positive, I searched the internet and looked up as many “good” heart baby stories as I could find, but nothing could prepare me for something like this. A few days pre-surgery, Scarlett had her Pre-Op appointment. They took x-rays, blood work, did an EKG, took all of her vitals and we met with a PICU nurse to go over what to expect before, during, and after Scarlett’s surgery. We also met with her surgeon. I asked questions like: What is your success rate? How often do you do this surgery each year? How long will Scarlett be on a bypass machine? What is the recovery timeframe for this type of surgery? Will she need a blood transfusion? Can I donate my blood? Who will be opening and closing the incision? Do you have any specific concerns about her in surgery?
The day of the surgery arrived and our hearts were breaking. I’ll never forget that morning… Andy and I hardly spoke a word on the car ride to the hospital. The waiting room was filled with nervous parents and patients waiting their turn to be called back. Andy and a nurse took Scarlett to a room to have her put to sleep. Letting go of her was the hardest thing I’ve ever had to do. Scarlett’s surgery lasted about 2 ½ hours and her surgeon told us everything went very well and an hour later we got to see her. She was hooked up to many tubes, but we had a sense of relief knowing that her heart was fixed. Scarlett was on a ventilator, IV’s, arterial line, urinary catheter, chest tube, heart monitor and was given morphine pre and post-surgery. She was in the PICU for 24 hours and then moved to the cardiac floor, where lines would be removed each day depending on her recovery. We were able to hold her on the second day. By the third day all of the tubes were gone, she was given Tylenol Codeine for pain, Lasix for fluid retention and she was given light oxygen until she was breathing 100% on her own. Scarlett was released on the fourth day and sent home taking Lasix for fluid and Tylenol for pain. Her sleeping and eating habits were a mess for two weeks. She had terrible stomach pains for a week after surgery. The doctors seem to think it was from all the meds she was given during surgery.
There are so many emotions that you feel when you find out something’s wrong with your baby… You question everything. I wondered what I had done wrong to cause her heart defect. Did I forget to take my vitamins? Was I eating right? What did I do to cause this? You feel helpless. You wonder why this is happening to your baby and your family. Andy would tell me its life, we will get through this and we did.
Scarlett is now a happy, healthy and thriving eight month old baby girl. You would never know she had heart issues unless you saw her surgical scar. She is so sweet and full of life. Scarlett’s heart will always need to be monitored but her cardiologist and pediatricians are so pleased with her recovery and hope that she will never need another procedure in her lifetime.. (Written by Scarlett's mom, Carrie)