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description=A Father s Journey through his son s fatal Congenital Heart Defect;

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ce a small chance of survival past birth even with current medical treatment can be given a better chance to survive in the future all of the psas communicate the startling number that 1 in 100 children are born with a congenital heart defect the psas also encourage pregnant women and families to ask their health care provider about adequate screening upon birth of their child as well as the need for research into congenital heart defect treatment the psas direct everyone to insert name of organization and or people willing to step up and get this done s website here to learn more i don t know about you but i swear to my heavenly father his son and the holy spirit if i had 2m dollars this would be done what it would be doing is simply what we don t have the public aware that our children are dying they face an uncertain future and unless a foundation is formed or merged to take on this task to educate the public there are so many people sitting at home that have no idea how to get involved and most don t even know this happens there are so many philanthropic people in our country that would jump on this and they don t know president s and ceo s of companies aren t watching tv with their family and see this and then something happens to them filled with the holy spirit they feel compelled and send an email i d like to partner up with your oranization and do more i know that the chapter s of these national organizations have done a tremendous job at bringing chapters like it s my heart detriot online people are starting to get effected but right now the fire is strong we are motivated can we continue to trudge along in this battle with the same results we ve been getting is anyone really happy about the fact that we get 10x less funding than autism maybe this is just me maybe i feel like i m doing nothing sure aiden s story has brought a lot of impact on a lot of people he changed their lives in many unique ways but i feel like making an impact on a few hundred to thousand people isn t enough for me or for him please don t misinterpret that i think everyone isn t doing enough in fact i m saying the opposite we re doing a ton but are we really one in 100 it is my belief that if we as a community don t together unite as one we re not going to achieve something that autism has in the next 10 years and we wanted it done yesterday is it going to take me quitting my job and relying on the charity of others to travel this country by foot door to door business to business to gain momentum for the task that lies ahead or is there support from those in advocacy positions to rally behind one cause please share your comments and thoughts input on this matter is extremely important to me posted in chd awareness 25 comments the story of aiden matthew beers december 18 2009 by levi beers a father a father by my own definition is one that is supposed to journey to the ends of the earth putting everything aside for his family he is to provide and care for his wife and equally help to raise and teach good values to their children from the experiences in his own live like the terminator a father should not quit until his last breath a father does not have to be physically strong but mentally savvy to circumvent problems that arise in a family s life together so that the family is safe in love and safe in environment at all times that every member of that family knows if we run into a scary situation dad will take care of it without a second thought that family will follow your lead my son was conceived in january of 2009 he s my 1st child and he s if you can t tell a boy the feeling of a man having a son is one of extreme joy and a unique feeling i can t quite describe but it feels so good i can remember letting my mind run every chance i got would he be into camping and fishing because i d really like to do those things with him doing 4 wheeler rides taking him to the museums to explain to him about various different types so that i can see what kinds of things he looks like he s interested in going over the gameplan in my head that i d never force my child to do something but to explore with him enough things that he ll do things he really likes i visioned talks i would have with him about different aspects of life like bullies now not to be one and how to respond to one those types of thoughts had frequently found there way to my day dreams about 17 weeks later during the 20 week ultrasound first they do a few tests for down syndrome and a few other defects then they check out all the babies organs i didn t even know they did that and then tell you the sex of your babby and you go home talking all the way about what are we going to get him for christmas for clothes that s not how it went that s how it should have went instead while performing an ultrasound the ultrasound tech was taking quite a bit of time on the babies heart something s wrong she said with a 5 minute intermission to her next statement while my wife starts letting out these aweful sounds like i ve never heard there looks to be something wrong with the babies heart she says i get that part i said now what do we do we have to get you in children s hospital for an echo cardiogram if you have the insurance even if i didn t have insurance i d have gotten an echo one way or another but the 5 day off appointment left us in a situation that some people can crack in immediately i took to the internet and found the mother control babycenter board babies and children with heart problems this group of women contributed to the transformation of my entire life immediately upon posting i had tons of feedback from people who are going through the diagnosis stage people near delivery of a chd baby and people who have both chd newborns and chd older kids by the way the mother s talked and how i saw the kids being happy it gave me a great sense of no matter what i m fighting for my little boy till the end so i asked alot of questions on bbc twice as many to my health care providers and became my own minicardiologist aiden had a pretty complex congenital heart defect unbalanced atrioventricular septal defect with pulmonary atresia and situs inversus w heart lungs in correct locations instead of separate mitral and tricuspid valve inlets heart valves a common atrioventricular avv valve has a single inlet into the ventricular chambers so where we have 2 heart valves working aiden had one and that valve had a mild leak now the mild leak wasn t a concern for children s that would most likely heal up on it s own with the pulmonary atresia no pulmonary valve which let blood flow from the pulmonary artery and onto the lungs didn t exist to make things worse his pulmonary arteries were split off in different locations instead of being close together the degree of his unbalancedness was severely unbalanced with a single dominant ventricle and a second almost non existent and useless ventricle resulting in a single ventricle physiology the situs inversus w heart lungs in correct locations meant all the other organs were on mirror sides of his body possibly causing kinking in his intenstines and either 0 or 2 spleens the other big kicker given an avsd downsyndrome was in the 70 probable area catching my breath emotionally i can t begin to tell you what hearing his specific defect is and all that can happen does to the father of that child you can feel your heart breaking stronger than any other emotion you can imagine immediately your thoughts are will my child live immediately they tell you to talk to a genetic counselor and start seeing a high risk obgyn genetic counselor with a side of termination happiness i had a long talk with tracy s high risk ob dr henry galan md who is co director of the colorado high risk maternity and newborn program section head of obstetrics the director of the maternal fetal medicine fellowship and associate professor of obstetrics and gynecology i said in no way shape or form are terminating our child so make that known to everyone ok perfect now we meet with the genetic counselor who s taking tree notes from tracy s brothers ex girlfriend s new husband s children seriously that has nothing to do with our family genetically kathleen diguilio ms cgc prenatal diagnosis univ colo then proceeded to tell us that aiden s diagnosis is so severe he has almost no chance and that most parents in our situation terminate their children we were instructed to hurry because the last termination point was 1 week away we simply stood up and walked out of the room my son doesn t need an amniocentesis to survive and your telling me the 1 chance will never happen lady my son has a chd i m not taking chances next no more we declined any type of invasive testing as it wasn t changing our minds anyway and we waiting until the 25th week to see anyone so people stopped talking to us about termination once that was cleaned up we started going back to children s hospital denver for our echo cardiograms needless to say the remainder of tracy s pregnancy was a difficult one many tears what if s all while arming ourselves with every piece of possible information i can tell you nothing will ever prepare you enough but it is good to prepare aiden s birth during a visit to the university of colorado for a non stress test tracy s amniotic fluid was very low red flag 1 taking quite a long amount of time we finally made it up to the birthing suite b c this was going down now ok so i thought here comes our smooth plan i didn t notice it went right out the window tracy was having a very difficult time being induced red flag 2 at one point during the induction tracy had gotten a fever about 30 hours into labor red flag 3 mother fever red flag 4 30 hour labor on a heart baby with low amniotic fluid aiden then went into an svt episode where his heart rate exceeded 200bpm red flag 5 and stop my son who is a baby with a congenital heart defect is in an svt episode with low amniotic fluid and a stalled pregnancy the father and mother are requesting a c section instead of letting me talk to someone on the floor the almost doctor that was on call said no more problems occurred up and down to the point where a training doctor tried turning the baby inside tracy without the use of an ultrasound machine had she used that machine they would have saw that aiden was in the correct position and their turning procedure caused markings on the baby as well as traumatic stress for my wife at 50 hours of labor my wife exhausted weakened and fluctuating heart rates on the baby while they still refused our c section one of the almost doctors came in none of the doctors we had met with for months were anywhere around during any of this except for 1 time for a brief moment meeting so the almost doctor came in and said it s time to push after looking at the numbers push 3 more of those and aiden was born into this world with an umbilical cord wrapped around his neck after a few minutes of one of the worst times of my life i watched my son lifeless until the nicu team came in as far as i was concerned at the time university of colorado dr henry galan s practicing doctors put my wife and my child at risk giving both of their conditions to deny us a c section after 5 red flags were given to sustain a c section decision ugh days with aiden i don t want to go through alot of this because it s on his blog site and that harddrive will be here after the first of the year repaired so i don t want to try and think of those days writings i ll just rehash what i felt after stabalizing him and getting him off his ng tube and a bunch of other things i got to have him lay on my body kangaroo care where daddy and his son slept for about 3 hours not moving an inch i got to talk to him he got to see me i tried to pretend i could transmit the wishes i had for him in this world to him we watched a football game together ok so while it played in the backround i d oogle over how beautiful he is i will forever cherish the moments i got to spend with my son post op aiden had the completed surgery where they repaired the leak the best they could his pa s and putting a shunt in aiden went into cardiac arrest 5 hours after surgery and couldn t be revived after nearly 40 minutes i gave the go ahead for the team to stop they were beating on my son and shocking him and stabbing him with needles all while his scar from the ohs bled the beautiful color my son had was at this point white my son had been gone for a while that was clear from the no results it was time they gave his body rest i couldn t bring myself to say goodbye now today friday 12 18 09 is 8 weeks after my son s death he died october 23rd 2009 i can t say that i don t experience that roller coaster of emotions it s very hard all i have are photos that were taken professionally by now i lay me down to sleep during one of his very good days 130 to look at his room of things i bought for him and a makeshift memorial to him at my home i don t want him out in the cold without his family i just want to have my son back in my arms to say hey buddy daddy did it we got you fixed your gonna be ok but i only can talk to his spirit i can t hear the giggles i can t watch him grow and explore i can only imagine what it would have been like and maybe someday the lump in my throat will go away and allow me to properly swallow when i m crying losing your child is the hardest thing anyone can ever go through it is the ultimate loss the ultimate stress i ve been through alot degenerative disc disease lots of pain surgeries family problems my distanced father money problems losing everything having to rebuild nothing not even all of that combined in a single day even compares the bible says if you pray about something and believe in it you must really believe it is going to happen you have to show that faith so i put all my eggs in the he was going to live basket pacing myself during his 15 days making sure we got sleep and we re rested now of course i regret all of that i know there was no way to know and what i was doing was best for him because i knew he was going to come home i just was crushed when i knew he never would my little boy did chance people though before his surgeries i had about 2 500 unique people that had read his site during his birth days after surgery and death we had almost 55 000 unique visitors in those 15 days sent hundreds of messages that said aiden s story had made people as parents stop fighting about stupid things and realize they have health and they are hugging their kids tighter other parents whom have said i inspired them with how i fought for aiden now they were going to do the same for their child i had letters from mothers that considered termination until reading our story so aiden has already saved lives and did more in his short time than most do in a lifetime i am so proud of my son i only wish he was still here posted in aiden matthew tagged story of aiden matthew b...