Savannah’s Heart Story
| Told by her mom Carrie.
Diagnosis: ASD & Heterotaxy Syndrome  My next visit with my OB-GYN I informed her of the findings and she had me scheduled to go to the high risk pregnancy doctor for the rest of my term and to be monitored every visit. She also informed me to inform my baby’s pediatrician so that if any tests need to be done they can have them ordered for when she is born. Needless to say I didn’t make it full term. I had preclampsia at 36 weeks. I remember going in to the OB that day. I thought I felt funny. While I was being monitored Savannah’s heart rate was in the 80’s high 90’s, very low. My blood pressure was also high. So my OB-GYN ordered me back to the hospital to be monitored. As I was walking out she informed me also that we might be having a baby today. A baby today I thought. Oh My. Sure enough that is was happened Savannah’s heart rate stayed the same and my blood pressure topped 195/90. So I was informed we were going to be having the baby that day. I called my Pediatrician immediately and told her of the news so that she could have the tests lined up. At 8:50pm came out Savannah Grace weighing 7lbs 3oz 18 inches long. I didn’t get to see her for the rest of the night due to her breathing being terribly fast and tests being done. She was in the NICU. I held her once the next day. For 30 minutes. Her breathing was so fast it scared me. So back to the NICU she went. I was informed that we should get the results in from her tests also. I remembered having a team of specialist come in after her EKG and Echo cardiogram were read. They told me the baby had a heart blockage. There is nothing we can do for her here! She would have to be moved to the nearest major hospital within the hour. We had a choice of Texas Children’s in Houston and another one. I automatically chose Texas Children’s. My heart had dropped! I kept replaying “heart blockage.” What do they mean heart blockage? I broke down in the bathroom. Sobbing. Thinking what could I have down differint during my pregnancy. Seeing her leave strapped down in an incubator leaving with the Kangaroo Crew headed to Texas Children’s. Without ME! Was my all time low. I had to be with her. I remember begging the staff to let me leave early. I had my 3rd C-section and it wasn’t even 24hrs yet. I had given birth at 8:50pm on Wednesday. Finally they agreed due to my situation that I could leave at 12 midnight Friday! I just wanted to be with my baby girl! Being whisked out of the hospital after giving birth without my baby in my arms! That was heart wrenching! That is usually the cute photo opt of the nurse wheeling you down and you holding your baby securely in your arms. That was far from my experience. Seeing her at Texas Children’s for the first time, she was strapped down with every type of monitor. A feeding tube also because she refused to eat. Then finding out she had Heterotaxy Syndrome. I remember being blunt with their team of doctors and asking, “What did I do? Why is her heart that way? Was I sick too much during pregnancy? Did I not get enough sleep?. Too Much Caffeine?” I was so torn. They calmly informed me that it’s nothing you could have done or not done. The guilt I felt was unbearable! They informed me it’s just one of those rare diseases that just forms out of nowhere and that it is being studied more because there are more and more cases of it. They also told me Savannah has a working spleen! Which isn’t common in Heterotaxy Syndrome babies! Also NONE of her organs were mirrored! Her liver was center mass or mid line at first but Prayers were sent up and it went to the right side. They released her about 2 weeks later. I had orders to take her to a Heart Specialist in their Network named Dr. Sappire. He is AMAZING. Savannah was put on Digoxin and Lasiks at first and finally put weight on. He informed me she does need surgery but as long as she is thriving we could hold it off. A couple of months went by and she stayed at 10 lbs. even and wasn’t growing. So open heart surgery was scheduled for Oct. the 16th with Dr. Hienley! An Amazing Wonderful Doctor that specializes in Hedrotaxy babies. Open Heart at 6 months weighing 10 lbs. 1 oz! I remember handing her over for her surgery. I wanted to melt. God had his hand on everything. Surgery went by in 8 hours. Dr. Hienley came in and explained everything he had done. Her ASD had been patched and so forth. Seeing her after surgery! Words cannot describe! They just cannot describe. I was very disappointed the hospital did not inform you how horrible that would be. Needless to say, we left the hospital in one week after open heart! When our stay should have been at least 2-3 weeks! That was God! She had NO complications at all after surgery! Oh and so Much More! But one thing was so very Clear when everything wasn’t! God was with US THROUGH IT ALL! IF, Dr. Goodrum didn’t find her ASD early on in an Ultrasound. Then an EKG or Echo cardiogram would not have been ordered for her after birth. Which is what caught her Heterotaxy Syndrome. I could have left the hospital not knowing about her CHD only her ASD!  ~Carrie, July 2009 |