This blog has been discontinued but remains up for various purposes. To learn more about Aiden visit his journey @ babyaidensjourney.com
To learn more about Aiden’s daddy Levi, check out his site @ levibeers.com
For my Son in Heaven, even though a CHD took your life we will fight for the thousands and thousands of others,
because of you sweet boy we just may save a few lives. Thank you for teaching your Daddy so much, I love you Aiden Matthew Beers.
…. Yes, he got the date wrong …. I got an email I am receiving an updated copy with the correct date ….
(Just click the image to see it bigger)
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Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?” God paused for a moment and replied, “Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” he asked.” God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.” The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this – it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer – to unlock this love – to create this miracle – for the good of all humanity.” Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, “I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!” God smiled and said, “You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you. In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.” At that moment the brave little soul was born into the world, and through his suffering and God’s strength, he unlocked the goodness and love in people’s hearts. Many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Lives changed forever. The world was a better place. The miracle had happened.
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I’ve been swallowed into this war since May 2009 and I’ve watched too many of those we fight for lost. Maybe it’s just me, maybe it’s just because I’m still angry my son was a casualty, but on what fronts are we winning? The Congenital Heart Futures act is the result of many dedicated individuals and advocates hard work and many restless nights. It is a great piece of legislation that addresses a significant problem with Congenital Heart Defects, the public doesn’t know, some in the medical community could care less and no one is funding the research but for the donations of very kind individuals to organizations like the Children’s Heart Foundation, however that said, there isn’t exactly a rush of submissions to the AHA for CHD Research projects either in children or adults. It is fact that the American Heart Association (AHA) directs only $0.30 from every donated dollar to research, and from that $0.01 goes to pediatric cardiology research for Congenital Heart Defects. (Source: Children’s Heart Foundation / Self Research @ AHA) and I can’t find anyone to give me a number of adult cardiology research for Congenital Heart Defects. Remember, these children do grow up, so care doesn’t stop after they have their first surgery. I don’t personally know Steve “The Funky Heart” but I know he had his OHS in 1967 — he’s been living with a Congenital Heart Defect repaired 42 years ago. I can’t even imagine what he faces on a day to day basis, how many times he’s heard, “I don’t know.”
Many fantastic people have started some great organizations to spearhead the problems faced by our community; The Children’s Heart Foundation, Mended Hearts, Mended Little Hearts, It’s My Heart, Saving Little Hearts on a national level, and even more people that have started some great things, like Kelly Manz and CHD Babies, Bobbie-Jo Steward and Join the Fight: CHD, more and more advocates are setting up individual efforts within the social networking sphere to really get the attention of others and to unite those of us that are affected. But what are we fighting for?
In 2005, Bob Wright the vice president of General Electric, and his wife felt moved because his grandson had been diagnosed with Autism, he founded “Autism Speaks”. They attracted a powerful board of directors including world-class scientific advisers and celebrity fund-raisers like Jerry Seinfeld and Paul Simon. Easy enough when you have an unlimited amount of resources like that. Since it’s creation it has merged with 3 of the national autism organizations. And in 2006 it paid slightly under $1.2m (million) dollars to partner with the AD Council to launch a $25 million dollar Nationwide Awareness Campaign. Check this out, from the AD Council:
Autism is the fastest-growing developmental disability in the United States.* Fourteen years ago, only 1 in 10,000 children was diagnosed with autism. Today, that rate has soared to 1 in 150. Despite this prevalence, research shows that many parents of young children are generally unaware of autism. This campaign seeks to educate parents about the growing rate of autism in this country and to ultimately increase the level of early detection. Because there is currently no cure for autism and no effective means to prevent it, early detection is the crucial first step in helping children with autism. With appropriate early-intervention services, from ages 3-5, between 20% and 50% of children diagnosed with autism will be able to attend mainstream kindergarten. All of the PSAs communicate the startling statistic that 1 in 150 children are diagnosed with some form of autism. The PSAs also encourage parents of young children to visit http://www.AutismSpeaks.org to learn the signs of the disorder. The campaign launched in April 2006. * Centers for Disease Control
Now let me for a moment show you a vision that we probably all share. On January 21st, 2011 the following page was added under “Congenital Heart Defects” on the “Campaigns” section of the AD Council’s website.
Congenital Heart Defects (CHDs) are the most common occurring birth defect in the United States * Today in our country 1 in 100 children are born with a CHD, it has become an epidemic. Despite these large numbers, research shows that nearly all parents in our country are unaware of Congenital Heart Defects. This campaign seeks to educate the public and medical community about the growing rate in which Congenital Heart Defects occur in live births and the need for an increase in early detection as the death rate from non-detection is catastrophic as well as the growing need for medical options that provide a brighter long-term prognosis for these children that will follow them into adulthood. There is no cure for Congenital Heart Defects nor are there any means to prevent it, which is why early detection, education, family support and more research are needed to help both children and adults who suffer from CHDs. With detection at birth, these children face a much greater chance to survive and with research the growing number of children who have complex congenital heart defects and face 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 »
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 Beers | 6 Comments »
My Son is an Angel 