OK, I’m going to try and give you the Reader’s Digest condensed version of the story yet still give the details I think you should know. So, I hope this makes since to you. I’m sure most of you remember that I announced that my wife was pregnant and our baby was due Feb 29th. Well, time passed and as those of you who have been pregnant or known someone close that has been there is test after test after test. One of the blood tests came up with some odd results. The results don’t say there is a problem, they just say there is a higher possibility of problems. The only way to know for sure is by a amniocentesis which is a long needle that goes into the sack where the baby grows and pulls out some of the amniotic fluid which is then sent out to be grown and tested. There is a 1 in 200 chance of a miscarriage if you do this test. And that is much more likely than what they said our baby might have. So we decided not to do the amniocentesis.
During a normal sonogram they found that our baby had a cleft lip. Which is actually very common in babies and is 100% fixable. Then they thought there was heart problems so we were sent to a echo cardiologist which could see the heart better and determined yes there were problems. …again, these are not that uncommon and are 100% fixable with surgeries starting at about 6 months of age.
Moving forward and skipping a bunch of not so important detail, on Jan 22nd we were doing a NST (non stress test), it’s where you sit still for a long time and they monitor the babies heart and the mom’s contractions (moms start having small contractions way before it’s time for birth… pretty much the muscles getting ready for “the big day”.) Well, what was happening with Canden (our baby) is every now and again his heart rate would drop pretty far AFTER the contraction. Which shows the baby is stressing. We were then sent over to the woman’s hospital for a longer monitoring. As the night went on these continued to happen. And since a while back we decided to give this baby the best chance he was going to have we decided to be pretty aggressive. Meaning if there was a problem, we would do a c section to get him out. (skipping some stuff again) on Jan 22nd of 2004 at 10:50 pm Canden was born c section. He had some physical abnormalities which kinda supported our suspicions about his health. He was transported to a hospital more able to take care of premature babies and such and blood was taken. That blood was tested and it was determined he is positive for Trisomy 18.
Trisomy 18 (without getting into too much detail) is one of those things that just “happens” it doesn’t run in the family, it’s not something we ate or the way we conceived this child. It is a chromosome problem. Basically you are supposed to have 2 of each chromosome. And in our child the chromosome #18 has 3 instead of 2. another example of an extra chromosome problem is Trisomy 21 which is down syndrome. If you’d like further information on this there is plenty online. http://www.trisomy.org/html/trisomy_18_facts.htm and http://my.webmd.com/content....3CA348} to get you started.
He started on one ventilator and was quickly moved to another more drastic machine, one that vibrates and gives him 600 breaths per minute. Since Trisomy 18 is fatal, we decided to sign a DNR (Do Not Resuscitate) order. And just to “keep him comfortable” until he decides to leave us. On Jan 30th his breathing was better and they were able to move him to a machine that is “nicer” to his body (only breathes at about 60 breaths per min). This one actually can tell when he is going to breath and help him. And if he stops breathing or isn’t breathing enough, the machine does it all for him. Since we signed a DNR if this machine stops working for him he will not be moved back to the other machine. On the plus side, this machine has a flexible tube when the vibrator one has a very stiff tube. What does this translate to? We can hold our baby boy on this machine when it was impossible on the other. It is very nice. We sat there on that day for about 4-5 hours each holding him. (in one sitting) for the first time. Each and every day we go in and visit him. At first to sit by his bed side and hold his hands and touch his head, and now we sit by his bed side hold his hands and then have the nurse help him onto our chests where we hold him for many hours on end.
Does anyone else have any experience with Trisomy 18? Please feel free to contact me personally if you would rather than talk about it here on the forum. We’d love someone to exchange emails with.
Andrew + Deangela
(We'll keep you updated.)
During a normal sonogram they found that our baby had a cleft lip. Which is actually very common in babies and is 100% fixable. Then they thought there was heart problems so we were sent to a echo cardiologist which could see the heart better and determined yes there were problems. …again, these are not that uncommon and are 100% fixable with surgeries starting at about 6 months of age.
Moving forward and skipping a bunch of not so important detail, on Jan 22nd we were doing a NST (non stress test), it’s where you sit still for a long time and they monitor the babies heart and the mom’s contractions (moms start having small contractions way before it’s time for birth… pretty much the muscles getting ready for “the big day”.) Well, what was happening with Canden (our baby) is every now and again his heart rate would drop pretty far AFTER the contraction. Which shows the baby is stressing. We were then sent over to the woman’s hospital for a longer monitoring. As the night went on these continued to happen. And since a while back we decided to give this baby the best chance he was going to have we decided to be pretty aggressive. Meaning if there was a problem, we would do a c section to get him out. (skipping some stuff again) on Jan 22nd of 2004 at 10:50 pm Canden was born c section. He had some physical abnormalities which kinda supported our suspicions about his health. He was transported to a hospital more able to take care of premature babies and such and blood was taken. That blood was tested and it was determined he is positive for Trisomy 18.
Trisomy 18 (without getting into too much detail) is one of those things that just “happens” it doesn’t run in the family, it’s not something we ate or the way we conceived this child. It is a chromosome problem. Basically you are supposed to have 2 of each chromosome. And in our child the chromosome #18 has 3 instead of 2. another example of an extra chromosome problem is Trisomy 21 which is down syndrome. If you’d like further information on this there is plenty online. http://www.trisomy.org/html/trisomy_18_facts.htm and http://my.webmd.com/content....3CA348} to get you started.
He started on one ventilator and was quickly moved to another more drastic machine, one that vibrates and gives him 600 breaths per minute. Since Trisomy 18 is fatal, we decided to sign a DNR (Do Not Resuscitate) order. And just to “keep him comfortable” until he decides to leave us. On Jan 30th his breathing was better and they were able to move him to a machine that is “nicer” to his body (only breathes at about 60 breaths per min). This one actually can tell when he is going to breath and help him. And if he stops breathing or isn’t breathing enough, the machine does it all for him. Since we signed a DNR if this machine stops working for him he will not be moved back to the other machine. On the plus side, this machine has a flexible tube when the vibrator one has a very stiff tube. What does this translate to? We can hold our baby boy on this machine when it was impossible on the other. It is very nice. We sat there on that day for about 4-5 hours each holding him. (in one sitting) for the first time. Each and every day we go in and visit him. At first to sit by his bed side and hold his hands and touch his head, and now we sit by his bed side hold his hands and then have the nurse help him onto our chests where we hold him for many hours on end.
Does anyone else have any experience with Trisomy 18? Please feel free to contact me personally if you would rather than talk about it here on the forum. We’d love someone to exchange emails with.
Andrew + Deangela
(We'll keep you updated.)
