Madeline, born 2003Madeline was welcomed into our family on October 2, 2003. By the time the morning had come around, several extra tests had been run and we received the news that she may have something wrong with her heart. By that evening, we were told that Madeline had unbalanced AV Canal defect, Pulmonary Stenosis, and bilateral superior Vena Cava. We were shocked to say the least as there was no indication during pregnancy that there was anything wrong - all tests had always come back in the normal range.
Our lives had completely changed. Now we counted respiration of our new baby every six hours, monitored medications and watched for signs of heart failure for nine months. Our local pediatrician was wonderful. It was as if we had a doctor who made house calls. She actually called to check on us! She made sure we had support through a friend of hers that had a child born with a CHD.
Our team of PCs in Richmond at MCV/VCU is excellent. It was determined that Madeline needed to wait as long as possible before having her surgery so that she would have more heart tissue to work with. By the time six months came around, the decision was that her surgery would need to happen sooner, rather than later. She had stopped gaining weight and maintained a meager 14 pounds until well after her operation.
Our PC, Dr. Allen, contacted Drs. Spray and Wernovsky at CHOP. Getting her case seen was a process in and of itself. But after three months and many phone calls, we had our date. We traveled to Philadelphia on Thursday, test were run on Friday, blood was donated on Saturday, prayers and laying on of hands on Sunday and operation Monday. I do have to mention that the overwhelming turn out that we had for blood donation was very touching experience. We had friends and relatives travel from five states and colleagues from local law enforcement came out to show support and donate as well. We were invited to attend the Sunday service at the Philadelphia Cathedral where we had a "mountain top" experience. People that we did not even know prayed for Madeline and laid hands on her - it was the most calming and transforming experience we have ever had - the presence of God was felt that day.
Our time at CHOP was excellent. The care and attention she received were the best we could have hoped. After a four hour operation, Madeline had a heart with four chambers and was recovering nicely. Her mitral valve was and continues to leak. At some point - short of a miracle, she will need a valve repair or replacement. Hopefully it won't be for a long time. We are so thankful that we had the support of our family, friends, the Little Hearts families, and network of prayer warriors to help us through the time before, during and after her surgery.
Two weeks after her surgery, we had a very close call. Madeline went into heart failure. We rushed her to the hospital in Richmond where she remained for close to a week; her medications needed adjusting. Since that scary time all has gone well. She is a thriving four year old and added more love and JOY to our lives than we could have ever imagined! We count our blessings each day that we have Madeline and look forward to a bright future!
Story by Madeline's mom, Christine - VIRGINIA
Jackson, born 2010
Ryan, born 2004