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 his 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 accepted the results given to us…. and that everything happens for a reason….and we may not know for years all the reasons why, but we will trust in God…..….
It’s pretty hard to put into words… I’ve heard people throughout my life say “I felt like I’ve been hit by a Mack truck”….well now I know. Sitting 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 passed 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 5, 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 lying 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… allowing his bowels to enter his chest cavity….at best surgery shortly after birth and a 6-12 week 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 too 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… rawing 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 to meet Dr. Kao, a pediatric cardiologist for a fetal echocardiogram to confirm the issues with the heart. One and half hours later we sat down with Dr. Kao who confirmed that the fetal echocardiogram showed 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 are at least four types) or any 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 rests 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.”
Many of you may have wondered what happened….where in the world did we go…..why haven’t we posted an update since March 14th….frankly I wasn’t much in the mood…
When you find out something like this, you tend to really not know which way you’re going….what to think and where to turn, what to say…. things seem to fly through your mind, tearing away at your mind, body and soul. These things were made up of a lot of what ifs, maybes, and if only’s….You try to find explanation for it all…why us…what did we do….what could we have done differently…and at some point along the way we found the answer….maybe not what we were looking for….a miracle, a chance that they were wrong….but something totally different, unexpected…..a deep realization of our faith…what true peace of the soul really is, and having Someone to turn to when no one else can provide.
Let’s turn the page back to March 15th. After we found out that it was full Trisomy 18, I honestly have to admit that the tears continued to flow….each little thing…dreams of those first steps…the first time he said mama or dada, and even those dreaded trips to Walmart filled with “I wannas” and the following “no’s”, even the changing of diapers only a mother could stand…. were shattering before our eyes. We burned up the Internet looking at all the pages we could, trying to understand what is was we were facing…read story after story of families, much like ours…and the more we read the more we came to see our story, our journey was one that many have lived…the amino…the results…the end. Of course we hoped that our ending would be different…who wouldn’t…
Over the weeks that passed we also had more sonograms, each one showing the same thing…his little heart farther to the right…his weight and measurements falling further behind… all classic…classic signs of the stories we read…
We started the process of preparation…and I will admit this part is very hard to type….harder than the actual doing looking back…. we talked with the OB, pediatrician, the funeral home, and the memorial company…. each one of them answered our questions, comforted us, and helped us prepare for the worse case scenario. Kellie and I talked a lot during this time…discussing the what ifs, the “when this happens” and our feelings….
We had many people, some I bet are reading this right now, asking for updates. Each and every time time it was the same…no change in the diagnosis….nothing more to add… Kellie is doing fine, and if we didn’t know it would be a pretty normal pregnancy…and right now I want to thank each and everyone of you for your concern during that time.
I personally got down on my knees every night during this time thanking God for my life, my family, Aden….and asked Him for His strength, the health of my wife, and in the words of the our Lord for this cup to pass if it was His will.
Let’s move to a specific date… April 24, 2008. Late that evening Aden turned over (Kellie’s words) something like nothing she had felt before….Friday the 25th he moved a little but nothing like he had been doing for the few weeks before. Saturday came with the same results until about 7 in the evening when he gave us a good strong kick/punch…. and from that point forward his movements really stopped… Sunday evening came and still nothing…we sat up until 2 a.m. talking discussing the possibilities…what if this was it….what are we gonna do….weeks before our doctors gave us the advice that after 24 hours of decreased, if not ceased movement, do not pass go…do not collect the 200…but head straight to the office…which is what we did Monday at 8:00 a.m…. and to our relief the whooshing sound of a strong heart came out of the Doppler speaker…..
Our next milestone was yesterday, Thurday, May 1st…our regular weekly visit… still no real movement, maybe a push or shove from Aden on Tuesday…but nothing more. Our OB performed the sonogram, and we knew within a matter of seconds that his heartbeat was gone…and that sometime between Tuesday and Thursday, our Lord had taken him home. We, as a couple, decided to induce. The agony of letting nature take its course over the next few weeks was something we could not bear…and at 10:30 p.m. on Thursday, May 1, 2008, the vessel that carried Aden Reese Post’s soul for 37 weeks came into the world… at 3 lbs. 10 oz. and 16″ long. And yes the full Trisomy 18 diagnosis was right….all the common signs were there…clenched hands, rocker bottom feet, low set ears… I will add his little face was perfect…
We spent our few moments admiring the most beautiful gift that God could have given to us…a life changing moment I must admit…and I must confess that I feel like I understand now how God felt when he gave His Son for us…not that I am comparing our journey to His….but more like a glimpse of understanding…
We made arrangements for Sunday, May 4, 2008, at 2 p.m. for a graveside service, and for those who are wondering…we ask that instead of flowers, plants, or anything else…that a donation be made to the Trisomy 18 Foundation Aden’s Page or the preschool at First Baptist Church in Sulphur Springs, Texas.
Again thank you for all your prayers and support…For those of you who can’t think of anything to say…don’t worry, we understand fully, there were times when I could not find words to describe how I felt…your lack of words are nothing to feel bad about…it’s a funny situation to be in… 7 months along and find out a diagnosis of Trisomy 18…far from a 10 week miscarriage…and from losing a child who is any age…I like to call it “The in between”…….. and don’t be afraid to ask us questions…especially if you have a child who has just been diagnosed with Trisomy 18. One of the many reasons that I believe that God has led us down this journey was to offer our help to anyone we can…..