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.
..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.
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.
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.
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.
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.