Sophie was born in September 2005. The pregnancy had gone fine and we were told by the doctors she was perfect and had no medical issues. We brought her home the next day. She was not eating well from start, but we were sent home. The staff stated that newborns sometimes had to be stimulated to eat. After being home for 2 days and still having feeding issues, Sophie would not eat for nearly 10 hrs. My husband Eric and I then brought her to the ER.

At the ER we were told that she was fine. The doctor’s exact words were, "Any parent would be happy their baby is sleeping so well". They were ready to send us home. I was not satisfied, I knew something was wrong. I then requested they do blood work, we waited and the blood work came back fine, they did not know what was going on. Her glucose was low, so they were giving her an IV and then started oxygen. Oxygen closes the PDA, which in healthy newborns usually closes within 2 days, this was closing and my baby was slowly shutting down before our eyes.

They were ordering a spinal tap, then a nurse practitioner came down and had worked with heart babies before at All Children's Hospital of St. Petersburg. Donna was her name, and I will never forget her taking over and saving my daughter’s life. She immediately called All Children's and had transport on the way. The special medicine they keep the PDA open with was not available at the ER we were at, so they had to call and get that also. Transport was in route and the Prostaglandin. We waited and prayed that our baby would make it. We were told when transport got there, that the medicine was not with them. SO we waited again for the medicine to arrive.

As we were waiting we were told that she had a heart defect found on echo and that her body had shut down and they would do everything possible to get her to All Children's safely and stable. After waiting another hour we were told the medicine had arrived by transport and they we giving it to her. She was then transported to All Children's. We were told no air lift was available so we had to have her driven 1 hr to hospital.

As we arrived at All Children's we were met by one of the Intensivist, Dr. Nichter, he told us they were doing everything possible to save her life. It would be touch and go for months. We were also told that day by the cardiologist, Dr, Huhta that Sophie had Tricuspid Atresia (Hypoplastic Right), Interrupted aortic arch, VSD (present with IAA) and ASD. He told us it was uncommon to see both complex defects together. We were brought back to see Sophie as she was laying there with about 15 drips going. She was on paralytic and heavily sedated. They told us her kidneys had taken a hit a few days later and they were trying to get her numbers lower and more urine out.

She slowly retained fluid and was so swollen. She was eventually put on dialysis. She also had many infections while waiting for her surgery. They could not do her heart surgery until she was infection free. She had numerous infections, from staph to urinary. One of these infections caused her to have surgery on her right arm; because the infection had gone all they way down to the bone.We were told by Dr. Jacobs that he would not do heart surgery until she was less swollen and infection free. She was slowly taking off fluid from dialysis but he was also uncertain about going into surgery on dialysis.

The original plan was to get her stage 1 Norwood, but she was too sick. They said if the Norwood was performed she would not live. They then came up with a plan, to get her through to the next stage2, the Glenn. They would perform the Hybrid (place bands around pulmonary arteries, to lessen flow to lungs) and place a stent in her PDA by Dr. Giroud. This would mean she would not have to go on the heart lung machine, but this would still be an open heart surgery. Her kidneys were to sick for the bypass machine.

So the plan was set, now we would wait and wait. On November 8, 2005 Sophie was finally having her Hybrid. We were so anxious, as we had waited for sometime. We were also scared to pieces. We were told it was a 50-50 chance she would survive this operation. She was then in surgery for about 4-6 hrs. Dr. Giroud had placed the stent and Dr. Jacobs had placed the bands. It was successful! We were all so very happy and grateful! Now we were on to the next step, getting her of the dialysis. That day she came out of surgery her kidneys started working. We were all amazed!

Sophie was still on the ventilator for sometime. That was another step in recovery, from being on the vent so long her lungs did take a hit and she was dependent on the vent for awhile. We eventually got off the vent and we were able to go home on Dec. 21, 2005. The doctors had all discussed her staying until next surgery or letting us go home. We were sent home, YEAH!!

We of course went home on 13 medicines and she had a G-tube placed since she would not eat by mouth. Getting home was the best feeling in the world, having our family together again. Not living at the Ronald McDonald anymore and having normalcy. The Ronald McDonald is a blessing, but we were happy to leave of course. At home Sophie started gaining weight and we started therapies and just waited on her next surgery. She had saturation's that were always lower, so we knew it would be pretty quick for next surgery.

We went in on March 1, 2006 for her cath and had her Stage 2, Glenn and modified Norwood on March 3. Also they had to take off her bands and take out stent from PDA. This surgery was also a bit more risky. She was in the operating room for 9-10 hrs. Dr. Jacobs came in and was clapping. He is a truly amazing surgeon. He told us everything went smoothly and was successful. He also told us, she would be out of hospital in 10 days.... This is Sophie we are talking about. We knew, no 10 days. I did have in my mind about 1 month. Things didn't work out that way; we were there for 2.5 months. She again had setbacks and with her chronic lung disease she was again hard to get off the ventilator and had clotted her left pulmonary artery. We found this in the cath lab. She was in the cath lab about 8 times and had another open heart surgery in April. Her left pulmonary artery was reconstructed. They were happy about the surgery, but later we found that it was wide open but no blood was getting to that left lung. We have done lung profusion scans and catherizations to see if the flow has came back. Last it was at 11%.

The doctors decided the best medicine for her, was to go home. Hoping that the left lung will relax and she will grow. Sophie has been in the catherization lab now a total of 14 times and has had stents and ballooning done to her LPA. She continues to see Cardiology every 3 mths and awaits her Fontan. She’s not an optimal candidate for the Fontan with her lung situation. We hope for research that will help Sophie live a longer life. We just continue to hold onto hope.

Sophie is followed by 6 specialists and has been diagnosed with Cerebral Palsy, Immune Deficiency, Chronic Lung Disease, Clotting disorder and has a feeding tube.

With all that said, you would never know Sophie has all these issues when you see what a great spirit she has. She’s our miracle and we hope with research she can also live on and teach others with her story about congenital heart disease.

Thank you for letting me share our story. As you read in the beginning we did not know Sophie had a heart condition. By bringing more awareness and letting our stories be told we can help others gain knowledge and acknowledge the signs of congenital heart defects, so that hopefully another family and innocent baby will not have to go through what my daughter and our family has. After being home from hospital with Sophie in January, I did call for my records, and it clearly stated in ultrasound report that 4 chamber heart was not visualized. This was never brought to my attention.

I want to stress to others, look at your ultrasound report, I did not and took the doctors word. Obviously this all could have been caught.

Heartfully,Tanya, Eric, Haley & Sophie Sanders