We were 15 weeks into our pregnancy when we found out we were having twins. At 29 weeks we met with our maternal fetal specialist for a routine visit. The twins were not progressing and “Twin B,” Keegan, specifically seemed to be lagging behind in weight and growth. When we returned 3 weeks later for a follow-up, I immediately knew that something wasn’t quite right. The doctor and the sonographer were taking too long looking at Keegan’s heart and coming in and out too many times. It was when Dr. Stedman finally came back in that we were told that Keegan had what appeared to be a heart defect. Furthermore, we were told that this particular heart defect, complete AV Canal, is associated with Down Syndrome.
Complete AV Canal is a heart defect where there is a hole in the wall dividing the heart’s upper chambers, a hole in the wall separating the heart’s lower chambers, and abnormalities of the tricuspid and mitral valves inside the heart. These combined defects cause extra blood to circulate through the lungs. This results in symptoms of congestive heart failure. We were devastated. It was all very overwhelming. We prayed that God would lead us to where we needed to be and that He would put doctors in our path that would do what was best for our child. It wasn’t long afterward that we met with Dr. Brumund of Pediatric Cardiology Associates. Dr. Brumund confirmed that Keegan did in fact have AV Canal and would require surgery.
Kimber Addison and Keegan Avery were born April 10, 2007 at Woman’s Hospital. Keegan was born with Down Syndrome, but our focus was not on what we could not change but what we could…making her heart healthy. Keegan spent a very long 49 days in the hospital. She was a preemie, so her birth weight low, just three pounds and a couple ounces. She did not feed well, she had some reflux issues, and she was diagnosed with hypothyroid. She had to be put on medicine that thankfully closed a PDA. Due to Keegan’s heart defect she could only eat about 5 cc’s, or one teaspoon, of formula in a 25-30 minute period before becoming too tired to eat any more. So a week before leaving Woman’s Hospital, Keegan had a feeding tube placed so that she could take in more calories in order to gain the weight she needed for her heart surgery. She was finally able to come home on May 30, 2007. Keegan saw Dr. Brumund every 2-4 weeks to have echocardiograms and checkups. It was in mid July that we were told that it was time to prepare for surgery. Again, we prayed that God would place Keegan in the hands of skilled doctors and surgeons that would repair her broken heart. We had researched a lot of doctors, surgeons, and specialists in regards to AV Canal repair. When we visited Dr. Brumund again, we had our list of names of doctors, surgeons, and facilities ready. We decided that Boston Children’s Hospital would be the best place to bring our daughter for treatment. Dr. Brumund scheduled surgery with Dr. Bacha in Boston and set up appointments with our Boston cardiologist, Dr. Breitbart. On August 5th, my husband and I, the twins, and my in-laws boarded a flight for Boston.
Keegan had open-heart surgery on August 7, 2007 at Boston Children’s Hospital. Keegan’s surgery went very well. Within 2 days of surgery, she was able to come off the ventilator and was moved from CICU to the step-down unit. By the third day she was drinking 3 ounces of formula in 20 minutes and by the fourth day she was off all of her heart meds with the exception of Lasix. Keegan was discharged from the hospital on August 13th, just six days after open-heart surgery.
Each day since that day, Keegan has continued to thrive. Today, Keegan is a happy, healthy, beautiful child. By looking at her, you would never know just how much she has endured. The scar on her chest is the only reminder of her broken heart. But we all know that God can heal broken hearts!
Our family was blessed to have the means to travel to Boston for treatment. That is why we are dedicated to LPCF. Children should have the opportunity to receive treatment at the facility that best meets their needs. By supporting LPCF, we can give children and their parents a little piece of mind in the midst of a very difficult situation.