When I was 20 weeks pregnant Mason was diagnosed with Severe heart disease. Our local hospital admitted they didn't even know what they were looking at because his heart was SO abstract looking. We were told Mason would likely not survive and if he did he would have brain damage and be severly disabled because of lack of oxygen. It was recommended to terminate. A few days and a lot of praying later we saw Dr. Tsirka at Batstate Cardio and she gave us our first ray of hope. Mason's heart was complex but she felt confident that Boston could try to repair it and that he would indeed grow fine and thrive until the umbilical cord was cut and he was left to do it on his own. At 27 weeks we went to Boston and after 8 hours of testing and ultrasounds we got the diagnosis...
Mason was born on 9-8-10 at B/W. He was rushed over to CHB and intubated that night after SATing in the 30's and 40's. At 2 days old he had a sutureless repair for the TAPVR. They told us it was the worst case of TAPVR they have ever attempted to repair. VERY RISKY! He did have a hard time the first couple weeks with getting off the vent. His lungs collaped twice and he stayed on CPAP then high flow O2 for another week. But...after only 30 days we were on our way home. He came home not eating well (maybe 7-10cc) and was tube fed...after only 24 hours at home Mason decided to rip out the tube and downed a 2oz bottle. Over the next few weeks he was eating normally and gaining weight well. Over the next few months he did very well. As expected, his O2 dropped and ended up on home oxygen. When he was 4.5 months old he went in for his Glenn. He was home in 4 days!!! He had a bad "Glenn head" and didn't sleep well but after about 6 weeks he had settled down and has been doing amazing ever since. Mason's O2 is about 92 right now (11months old) and has pretty much no complications or setbacks from surgery. He is learning to walk, talk, he's waving and playing like any other 11 month old would. He is a miracle!
The plan is a Fontan late summer/early fall of 2012. We are terrified and excited about it all at the same time. I think we will be glad to put it past us. We have been told by Dr's that he will likly need a heart transplant within the next 10 years. I don't think about that too much because so far he has done remarkably better then expected so I am betting on it staying that way. When he does need a transplant we are hoping he is older and technology has advanced to a point that they can use his cord blood stem cells (that we banked at birth) to create a new heart or repair the one he has.
I love to meet other families touched by CHB. We KNOW without CHB, Dr. Bergersen and Dr. Emani Mason would not be with us today.
- Heterotaxy Syndrome ( a rare disease that causes your major organs to grow abstractly, in the wrong place, or not at all)
- Infracardiac Total Anomalous Pulmonary Venus Return ( Mason was born with 6 pulmonary viens: 4 going to his liver and two going to his head. They were all tangled up and we were told it was the worst case of TAPVR they have ever attempted to repair.)
- Double Outlet Right Ventricle ( there is question about which ventricle is actually missing. It is very abstract looking but they think he has the right although it is tilted the wrong direction),
- Transposition of the great atreries (The blood in the Aorta and Pulmonary arteries are flowing in the wrong directions)
- Atrial Septal Defect ( So, Mason kinda has a common atrium. They think he might have a very small right atruim with a large ASD. They could never repair it to make 2 atrium so it doesn't really matter in the end),
- Pulmonary Stenosis ( this was actually a GOOD thing at birth because it slowed down the blood flowing to the lungs and he was able to avoid a Norwood or banding)
- Mason is also considered asplenic although after further testing we found that he does have a spleen it just doesn't work. His liver and his spleen decided the trade places. The blood is flowing through it but not cleaning it...we will be going to CHB on 8-22 to learn more about that.
Mason was born on 9-8-10 at B/W. He was rushed over to CHB and intubated that night after SATing in the 30's and 40's. At 2 days old he had a sutureless repair for the TAPVR. They told us it was the worst case of TAPVR they have ever attempted to repair. VERY RISKY! He did have a hard time the first couple weeks with getting off the vent. His lungs collaped twice and he stayed on CPAP then high flow O2 for another week. But...after only 30 days we were on our way home. He came home not eating well (maybe 7-10cc) and was tube fed...after only 24 hours at home Mason decided to rip out the tube and downed a 2oz bottle. Over the next few weeks he was eating normally and gaining weight well. Over the next few months he did very well. As expected, his O2 dropped and ended up on home oxygen. When he was 4.5 months old he went in for his Glenn. He was home in 4 days!!! He had a bad "Glenn head" and didn't sleep well but after about 6 weeks he had settled down and has been doing amazing ever since. Mason's O2 is about 92 right now (11months old) and has pretty much no complications or setbacks from surgery. He is learning to walk, talk, he's waving and playing like any other 11 month old would. He is a miracle!
The plan is a Fontan late summer/early fall of 2012. We are terrified and excited about it all at the same time. I think we will be glad to put it past us. We have been told by Dr's that he will likly need a heart transplant within the next 10 years. I don't think about that too much because so far he has done remarkably better then expected so I am betting on it staying that way. When he does need a transplant we are hoping he is older and technology has advanced to a point that they can use his cord blood stem cells (that we banked at birth) to create a new heart or repair the one he has.
I love to meet other families touched by CHB. We KNOW without CHB, Dr. Bergersen and Dr. Emani Mason would not be with us today.
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| MRI picture of pulmonary viens before repair |
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