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| Benjamin (2008) |
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| With his little Brother Isaac |
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Benjamin (2003) |
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At his 2 week well baby check-up, Dr. Arter, his pediatrician, heard a heart murmur. Through persistence and fast talking, she got Benjamin in the next day to see a cardiologist, Dr. Johnson, at St. Louis Children's Hospital. After initial observation and an echo, Benjamin was diagnosed with Total Anomalous Pulmonary Venous Return (TAPVR). Benjamin was admitted the same day and had surgery 5 days later. His repair required Dr. Mendeloff to delicately insert a baffle, constructed from his pericardium, to channel oxygen rich blood through the ASD and into the left atrium while oxygen-depleted blood flows under the baffle from his SVC into the right atrium. After surgery, Benjamin's sats steadily dropped and settled in the low 60s. 8 doctors, 3 nurses and 1 echo tech huddled together trying to figure out why his sats were not normal (between 98-100).
Six days later, when he was strong enough, Benjamin went to the cath lab in an attempt to solve the mystery. The doctors found a second defect, anomalous drainage of the IVC into the left atrium that required a second surgery. Initially, the doctors wanted to wait 3-6 months for the second surgery to allow Benjamin time to grow and heal. Benjamin's sats, however, wallowed in the low 70s. His doctors thought the risks of the coming cold and flu season and the possibility of a blood clot from the IVC bypassing the lungs and going back out into circulation outweighed the benefits gained by waiting. So, 12 days after his first open heart surgery, Benjamin had his second open heart surgery.
After surgery, Benjamin's sats soared to 100. But there was yet another challenge to overcome. Benjamin's blood pressure would not stabilize, steadily dropping, and his belly grew distended. More head scratching. He was rushed to the cath lab for an emergency procedure. The cath revealed a kink in the IVC and required another delicate procedure. Dr. Balzer inserted a stent within the site of the repair. Benjamin steadily recovered after this procedure, and went home 5 days later on aldactazide, propranalol (for an arrhythmia episode post surgery #1), and 1/4 of a baby aspirin. He is now at home with his parents, Emily and Joe, and smiles and giggles and laughs and plays.
May 2, 2003 Update
Benjamin had a few very good months following his TAPVR and IVC repairs. But, towards the end of 2002, we began to notice some new and troubling symptoms. His eyes were very puffy, his fontanel had also become puffy. His breathing sounded very loud, although we were not sure if this was heart related or simply his stridor (he had always had noisy breathing due to a slightly compromised airway). We nervously waited for his next visit to the cardiologist, in January. An echo showed that his SVC had become very stenotic at the site of his TAPVR repair. The doctor also thought that his pulmonary veins looked suspect, but thought that he should have a cath to get a good look at what was going on. They hoped to be able to stent or balloon the SVC to open it back up, but weren't sure that they would be able to do so because of the location of the repair.
The cath was a week later. They ballooned the SVC with mild success. The obstruction was only relieved by about 50%. In addition, his pulmonary veins had become stenotic. The left lower vein was completely gone (atretic). The right veins looked better than the left, but still a bit compromised. The doctors recommended a marsupialization for the pulmonary veins, and while they were in there, they would patch the SVC. Three days later, Benjamin went in for his third surgery. He came through with flying colors, and went home from the hospital 4 days later. The patch allowed the SVC to remain wide open. The right pulmonary veins were marsupialized, and the remaining left vein was snipped open close to the heart to relieve the narrowing.
Since the end of January 2003, Benjamin has continued to thrive. He is now a very happy 8 month old baby. His next cath is in June 2003.
September 13, 2003 Update
Benjamin had a diagnostic cath at the end of May, 2003 to get a good look at his pulmonary veins to see if the stenosis had progressed. Much to our surprise, it had not progressed, and things looked the same as they had post-op in January. This was truly a miracle for us because in the same amount of time last fall (4 months), the stenosis had progressed so quickly that Benjamin had lost one vein completely. His other repairs also looked great. His last echo in August also showed that his repairs all remain stable. It is now September, and he just turned one and continues to thrive. He was taken off of his aspirin therapy in August, and will go off of his other medication (Atenolol) this month, leaving him medication free!!
March 2008 Update
Benjamin is 5-1/2 years old, and is doing remarkably well. Heart-wise, he has required no further intervention since the last update (cath in May 2003). We have had a few scares along the way, but things continue to remain stable. He has sustained some lung damage from his pulmonary vein stenosis, and as a result suffered through a difficult pneumonia in the fall of 2007. But we are relieved that he was able to clear the infection and remain strong, giving us hope that his body is still fighting the good fight. He will inevitably need a trip to the cath lab to dilate his IVC stent sometime in the future. In the meantime, he lives a very active life, participating in swimming, karate, and t-ball. He also loves to ride his bike. After wading through his difficult first year and waiting for life to be somewhat "normal", it really does seem to be that way. We are thrilled. Since our last update, Benjamin has also become a big brother. Isaac was born in July 2005 and is heart healthy!
