CHD Diagnosis: Tetralogy of Fallot with Pulmonary Atresia, VSD and MAPCAS
Lila's Story: For the first ten days of Lila's life we thought she was a perfectly health newborn baby just like our older two children. Around 8 days old I noticed that Lila was breathing rapidly and I could feel her heart race when she was simply resting on my shoulder. She had already been to the doctor twice, so I didn't suspect it was much of anything, but I called our doctor just so I could bring her so he could tell me she was ok and I was worrying over nothing. However, as soon as I got to the doctor he listened to her heart with a stethoscope and told me I needed to get her to the hospital right away. Right away? Why? I thought he was just going to tell me my baby was fine and I was crazy for bringing her in. So, off to the hospital Lila and I go. They did an echocardiogram which pretty much told the doctors what they needed to know, but they needed a heart catherization to confirm her diagnosis. However, the only pediatric cardiologist that did the heart caths was out of state for a few days so we had to sit and worry, cry and pray over the next several days as we waited for her heart cath. Her heart cath confirmed that Lila was born with a rare congenital heart defect. At our local children's hospital we were told that Lila would need 3-4 initial surgeries just to correct everything wrong with her heart and then once her heart was fully repaired she would need additional open heart surgeries as her artificial pulmonary valve needed to be replaced when it became too small. We simply could not even imagine our tiny newborn baby going through one open heart surgery let alone four. We were scared, nervous and had no idea what this journey looked like. My first question was where will she have surgery and who is the best, most experienced surgeon to do it? Everyone at the hospital kept telling us how amazing the head surgeon was at our hospital. I was simply over whelmed at the time and could hardly process the fact that my baby had a broken heart so I put all of my trust in them. When we met with this surgeon he told us that Lila would require multiple open heart surgeries to repair her broken heart. He told us that there was only one other surgeon that would attempt to repair her heart in one surgery, but he said that it was a low success rate and he did not recommend it. We trusted his advice and said we would proceed with his plan. So at 3 months old Lila had her first heart surgery. She went into surgery early that morning and after many hours was finally brought to the ICU. Minutes after arriving in the ICU the surgeons said her stats were dropping and they needed to figure out why. However, the cardiologist that needed to do the heart cath was off work that day! They, of course, called him in an we waited for him to arrive at the hospital to do a heart cath. They determined the problem and Lila headed back into the OR for another surgery that same day. After many more hours Lila finally arrived back into the ICU late that evening. She was in very critical condition, but after a three week ICU stay we were finally about to bring her home. We were supposed to wait a few months and then go back for her next heart surgery. Just two months after her heart surgeries she got RSV and pneumonia which landed us back in the ICU for 3 more weeks. After we finally recovered from that nearly fatal case of RSV we were able to come home. Lila continued to get sick and got this virus or that virus all winter long. We lived in the hospital on and off through the winter and spring. With so many illnesses her second planned surgery kept getting postponed and finally the surgeon tat did her first surgery retired and was not going to be around to do her next surgery. So I started researching and trying to figure out who the best surgeon was for Lila's next surgery. Long story short we discovered there was one surgeon that specialized in Lila's heart defect. And he would do her full repair in ONE surgery not many like we were told. This was the most wonderful news we had heard. I was both happy yet upset that our local doctors never mentioned this surgeon who is truly the one and only surgeon in the U.S. that specializes in Lila's heart defect. Of course, we still dreaded another surgery, of course we did, but to hear that her heart could be fixed without going through multiple surgeries was such an immense relief. Her records were sent to Dr. Frank Hanley in California and surgery was scheduled for June. We flew all the way to California in June and Lila has yet another virus and surgery was cancelled. So, we came all the way back home and rescheduled surgery for August. Lila's 15 hour surgery in August gave her a fully repaired heart. It was a long and huge surgery, but it was so worth not having to go through 2 or 3 more surgeries. She had a 3 month recovery in the CVICU, but after 3 long months we were finally able to come home. She is 18 months old now and doing great! Lila will have to have more open heart surgeries because part of her heart defect is the missing pulmonary valve. Lila has a 17 mm human valve in her heart now, but once that valve becomes too small for her heart she will have to have it replaced with a larger valve. She is currently doing amazing and will go back for a heart cath in about 7 months. Our lives have forever been changed because of congenital heart disease. Surgery is not a cure. Lila will always have congenital heart disease.
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