We appreciate any donations that will help support Sophie with medical and travel expenses for her trip from Florida to Boston Children's Hospital for her fifth heart surgery on July 1, 2015 and future trips to Boston for yearly catherizations.
Sophie Sanders was born on September 29, 2005 with complex congenital heart defects, Tricuspid Atresia (Single Ventricle), Atrial Septal Defect, Ventricular Septal defect and an Interrupted Aortic Arch.
Sophie only has half of her heart working and has already had four open heart surgeries, and only one of her lungs works which puts her next open heart surgery at a very high risk.
Sophie's latest trip to Boston was on April 2, 2014 and she had two cardiac catherizations and an open heart surgery on April 7, 2014 at Boston Children's. They placed a BT-shunt in hopes of recovering Sophie's left lung for her next open heart surgery, the Fontan surgery in 6-9 mths. The doctors will determine by cardiac catherization in 4-6 mths if the left lung is receiving more blood flow.
Sophie's family has researched and sought out the top cardiac heart surgeon and heart team in the country and to make sure Sophie receives the best care, Sophie and her family will have to travel to Boston Children's hospital and expect a lengthy stay as Sophie's three previous heart surgeries averaged a two months stay per surgery. Your donation and support is greatly appreciated.
A HUGE thank you to all of Sophie's friends; your continued support, well wishes and prayers mean so much! And to all of Sophie's "NEW" friends who would like to support her, Please read her story below and FOLLOW her JOURNEY through Facebook.
Facebook - "Sophie's Journey"
CarePages- go to www.carepages.com - view Page "sophie929"
Sophie's Story from the beginning:
Sophie Sanders was born on Sept 29, 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 the 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 that 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.
Donna immediately called All Children's and had transport on the way. The medication that keeps the PDA open was not available at the ER we were at, so they had to call and get that also. Transport was in route with 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 were administering 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 took 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 the 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. Sophie was also diagnosed with immune deficiency, Sophie's body does not produce enough T and B-cells that help fight infection. 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 stage 2, 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 still too 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 some time. 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 some time. 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 a while. We eventually got her 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!!
Of course, Sophie 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 that we were fortunate to have access to while in St. Petersburg. 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 the 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 that 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 flow was reaching the left lung. We had done lung profusion scans and now 16 cauterizations to see if the flow has come back. Last it was barely trickling to the left lung and her left top lung beds are not working at all. The doctors decided the best medicine for her, was to go home, hoping that the left lung would relax and that she would grow. Sophie just recently visited Boston one oof the top cardiac children's hospitals in the country. Sophie is still not an optimal candidate for her Stage 3 Fontan surgery. The Fontan is more accepting when you have two fully functioning lungs. We have researched the best options in care for Sophie over the past four years and now it is the time for her next surgery. Sophie's oxygen levels continue to drop, she's in the 60's-70's now and is easily fatigued. As parents we know we cannot wait any longer. The longer we wait, we increase the risk of organ failure or stroke. The cardiac surgeon in Boston has done nearly twenty surgeries similar to Sophie. Sophie will have a day of labs etc. in April and then followed by a cath to try one last time with interventions to increase the blood flow to the left lung. The cath will follow with the open heart surgery.
Update: Sophie's surgery on April 7, 2014 improved her left lung blood flow. We will know on June 26, 2015 exactly how much blood flow is flowing to the left lung. The Fontan (Heart surgery) will be on July 1, 2015.
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