1 in 8,000… that’s what she told us…. 1 in 8,000 are the chances of having a baby diagnosed with Trisomy 18….. and now I bet you’re guessing that it isn’t good..and probably leaning towards “What is it?” by now….
Let me share with you what I know….
But before I do I must say had this happened 6, 5, or 4 months ago we might not have taken it as hard as we have… I’ll assume that most of you with children are like us….by 7 months you’ve found out if it’s a boy or girl, gotten a name picked out, started buying the things you expect to need, and started to refer to him as a part of the family….his little brother telling him good night, me carefully poking mom’s stomach to see him kick, and him disagreeing with something that mom “thought she wanted”…. That’s what makes it hard…I really don’t even know if “hard” describes it right now…..and knowing from their diagnosis (with a failure rate of way less than 5%) that mortality is upwards of 95%... and knowing that there’s a chance I will be there to “cut the cord” and see him alive for just a fleeting moment before God takes him to heaven…..I don’t know but it just seems to me that there is another word I should use…
Back on topic…. Trisomy 18 a genetic problem second only to Down Syndrome…you will find a lot more here http://en.wikipedia.org/wiki/Edwards_syndrome ..
Thank you for all your prayers…. Kellie and I have grown a lot in the last weeks, turning more towards God than ever before and we know and have prayed for His will to be done and over the next couple of weeks we will do continue to do so…. We have not lost hope…nor given up…. just excepted the results given to us…. and that everything happens for a reason….and we may not know to years all the reasons why but we will trust in God.....….
Jeff
Friday, March 14, 2008
Tuesday, March 11, 2008
Where we are....
Where do I start....
It's pretty hard to put into words... I’ve heard people through out my life say “I felt like I’ve been hit by a Mack truck”….well now I know. Setting there today and hearing the doctor talk about “multiple abnormalities”…the room became hot, I saw spots before my eyes, and I wanted nothing more than to wake up…wishing someone would shake me out of this crazy dream. A few minutes past and no one came….so I took a deep breath and started the process of trying to get my hands around the news…
Let me take you back to March 5th 2008….Our local OB did a sonogram in his office and told us he found a noticeable difference in his head size and abdomen size….maybe a nutrient issue…maybe a cord issue....whatever the facts, something wasn’t quite right. He scheduled us for a visit to a neonatal doctor in Dallas for Today, March 11, 2008.
Fast forward to today… 10:00 a.m. Candace our nurse started the sonogram, marking feet, confirming it was indeed a boy, showing us the profile (I’ve got that picture laying right beside the laptop), and locating organs. Overall he is a little small for his age (two weeks), that is assuming the dates are right.
She had a little trouble finding the stomach, and noticed a issue with the heart…..In comes Dr. Wallace and after a good fifteen minutes of looking around he gives his evaluation….
This my friend is the Mack truck...
First, there is a problem with the heart he believes, from what he sees it might be inverted (blood flowing the wrong way) which is not a problem before birth, but can cause serious trouble after delivery.
Second, there is indication of a diaphragmatic hernia, the diaphragm has a hole in it… allow his bowels to enter his chest cavity….at best surgey shortly after birth and a 6-12 weeks stay at the hospital…worst case obstruction of the development of other organs in the chest cavity; lungs, heart, liver…. causing life threatening problems after birth.
Third, I’m really sorry but by this time the spots had come and I didn’t really follow him to well, but I’ll do my best…. There was some indication of a dilation in one part of his brain, but on the bright side the tissue in that area looked well formed…. Oh yeah he also mentioned something about the shape of some part of his head….he really just skimmed over this and moved right into our options…..
Where do we go from here…
Amniocentesis… drawing fluid and running genetic test for known chromosomal abnormalities… what fun… Looking for the most common four abnormalities with a fluorescence in situ hybridization (FISH) test. Then we wait for two weeks for the full results… can anyone say stress… in short we did the procedure and the earliest we will receive result on the big four will be Friday March 14, 2008. We’ll have to wait two weeks for the full results.
After the procedure at 12:30 p.m. we were of to meet Dr. Kao… a pediatric cardiologist for a fetal echocardiogram to confirm the issues with the heart. One and half hours later we set down with Dr. Kao and she confirms that the fetal echocardiogram shows a ventricular septal defect….a hole between the lower chambers of the heart. Another fact of note…..the heart is pushed to his right side by something (Dr. Kao stated this could confirm the diaphragmatic hernia). The only good news she brought to the table was Dr. Wallace’s indications of a inverted heart were wrong…mainly because of the heart being pushed to the side.
The here and now….
In short..we’ve got a very sick little boy coming into this world from all indications, regardless of the test results in the next few weeks. The fact of the matter is that the “multiple abnormalities” indicate a higher chance of some type of syndrome be it Downs ( the internet tells me there’s at least 4 types), or an number of other ones. That is our biggest fear right now., and the reason for the genetic test. Which, by the way, neither one of our families have a history of……
Kellie and I have both turned to God…what hope we have rest in His hands. I have prayed and continue to for a miracle, for good results on the tests, and for an improved follow up visit in three weeks.
On our drive to Dr. Kao’s office a verse came to me….
Matthew 26:39 - And He went a little beyond them, and fell on His face and prayed, saying, "My Father, if it is possible, let this cup pass from Me; yet not as I will, but as You will."
I have fallen on my face….I have humbled myself before Him…and I have prayed that same prayer…..and I want nothing more than as He will…for Aden, for Kellie and myself.
I ask of you one thing……Pray for His will in our life, pray for Kellie and Aden’s health, pray for the peace of our family…….
You might be asking why I would take the time to put all of this into words….. It will keep me from lying to you….because when you ask me face to face “ How’s the baby…How’s Kellie” I’ll give you a simple “fine”… I plan on updating this page when we find out the results....
Jeff Post, Aden’s Dad
It's pretty hard to put into words... I’ve heard people through out my life say “I felt like I’ve been hit by a Mack truck”….well now I know. Setting there today and hearing the doctor talk about “multiple abnormalities”…the room became hot, I saw spots before my eyes, and I wanted nothing more than to wake up…wishing someone would shake me out of this crazy dream. A few minutes past and no one came….so I took a deep breath and started the process of trying to get my hands around the news…
Let me take you back to March 5th 2008….Our local OB did a sonogram in his office and told us he found a noticeable difference in his head size and abdomen size….maybe a nutrient issue…maybe a cord issue....whatever the facts, something wasn’t quite right. He scheduled us for a visit to a neonatal doctor in Dallas for Today, March 11, 2008.
Fast forward to today… 10:00 a.m. Candace our nurse started the sonogram, marking feet, confirming it was indeed a boy, showing us the profile (I’ve got that picture laying right beside the laptop), and locating organs. Overall he is a little small for his age (two weeks), that is assuming the dates are right.
She had a little trouble finding the stomach, and noticed a issue with the heart…..In comes Dr. Wallace and after a good fifteen minutes of looking around he gives his evaluation….
This my friend is the Mack truck...
First, there is a problem with the heart he believes, from what he sees it might be inverted (blood flowing the wrong way) which is not a problem before birth, but can cause serious trouble after delivery.
Second, there is indication of a diaphragmatic hernia, the diaphragm has a hole in it… allow his bowels to enter his chest cavity….at best surgey shortly after birth and a 6-12 weeks stay at the hospital…worst case obstruction of the development of other organs in the chest cavity; lungs, heart, liver…. causing life threatening problems after birth.
Third, I’m really sorry but by this time the spots had come and I didn’t really follow him to well, but I’ll do my best…. There was some indication of a dilation in one part of his brain, but on the bright side the tissue in that area looked well formed…. Oh yeah he also mentioned something about the shape of some part of his head….he really just skimmed over this and moved right into our options…..
Where do we go from here…
Amniocentesis… drawing fluid and running genetic test for known chromosomal abnormalities… what fun… Looking for the most common four abnormalities with a fluorescence in situ hybridization (FISH) test. Then we wait for two weeks for the full results… can anyone say stress… in short we did the procedure and the earliest we will receive result on the big four will be Friday March 14, 2008. We’ll have to wait two weeks for the full results.
After the procedure at 12:30 p.m. we were of to meet Dr. Kao… a pediatric cardiologist for a fetal echocardiogram to confirm the issues with the heart. One and half hours later we set down with Dr. Kao and she confirms that the fetal echocardiogram shows a ventricular septal defect….a hole between the lower chambers of the heart. Another fact of note…..the heart is pushed to his right side by something (Dr. Kao stated this could confirm the diaphragmatic hernia). The only good news she brought to the table was Dr. Wallace’s indications of a inverted heart were wrong…mainly because of the heart being pushed to the side.
The here and now….
In short..we’ve got a very sick little boy coming into this world from all indications, regardless of the test results in the next few weeks. The fact of the matter is that the “multiple abnormalities” indicate a higher chance of some type of syndrome be it Downs ( the internet tells me there’s at least 4 types), or an number of other ones. That is our biggest fear right now., and the reason for the genetic test. Which, by the way, neither one of our families have a history of……
Kellie and I have both turned to God…what hope we have rest in His hands. I have prayed and continue to for a miracle, for good results on the tests, and for an improved follow up visit in three weeks.
On our drive to Dr. Kao’s office a verse came to me….
Matthew 26:39 - And He went a little beyond them, and fell on His face and prayed, saying, "My Father, if it is possible, let this cup pass from Me; yet not as I will, but as You will."
I have fallen on my face….I have humbled myself before Him…and I have prayed that same prayer…..and I want nothing more than as He will…for Aden, for Kellie and myself.
I ask of you one thing……Pray for His will in our life, pray for Kellie and Aden’s health, pray for the peace of our family…….
You might be asking why I would take the time to put all of this into words….. It will keep me from lying to you….because when you ask me face to face “ How’s the baby…How’s Kellie” I’ll give you a simple “fine”… I plan on updating this page when we find out the results....
Jeff Post, Aden’s Dad
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