Star Kid 5k & Family Fun Run - In honor of my son Teague

[Popeman38]

In honor of my son, Teague, born 11/12/2003, died 04/23/2004, please support my team in the Start Kid 5k & Family Fun run. Details at the link below. Information about the run can be found at the end of this post. Our story follows the link:

https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1045241&supId=380269933

On November 12, 2003, I was blessed with the birth of my first child, a son we named Teague, at Fairfax INOVA Hospital. After a long day of labor eventually ending in a C section, he was born at 8:40 PM to a proud mom and dad. They had a little trouble getting him to breath in the operating room, but they assures us it was the stress caused by the long day of pushing and then C section, and it probably was just some amniotic fluid in his lungs. They whisked me and him through the hospital to the Neonatal Intensive Care Unit (NICU), where they cleaned him up, and inserted a breathing tube. He pinked right up and appeared to be healthy. They called in some specialists to check him out, but they thought he would just be on some oxygen to dry out his lungs and then he would be fine, so they sent me back to my wife in recovery. She was still a bit groggy from the C section, so I was pretty much staring at the wall a bit overwhelmed by the day’s happenings. My daydreams were interrupted by a cardiologist (who had no bedside manners whatsoever I would come to find out), who informed me that my son had Tetralogy of Fallot with Absent Pulmonary Valve Syndrome. I had no idea what that meant at the time, and I didn’t know it at the time, but those words started me down a path that would change me as a man and include both the best and worst moments of my life. 9/100th of 1%. Those are the odds of having a kid with Tetralogy of Fallot with Absent Pulmonary Valve Syndrome (3% of 0.3%, if my math is wrong, it won’t be the first time).

Tetralogy of Fallot is a condition with 4 defects of the heart: 1) narrowing of the right ventricular outflow, 2) overriding aortic arch, 3) ventricular septal defect (hole in the ventricular septum), 4) Right ventricular hypertrophy (right ventricle is too muscular). Altogether, nothing too bad and an “easy” fix with today’s modern medicine. The kicker was the absent pulmonary valve syndrome. With no pulmonary valve, your pulmonary arteries are much bigger than they need to be and regurgitation of blood happens (no valve means when the heart expands, it sucks blood backwards, leading to slow blood flow and lack of oxygenated blood). The engorged pulmonary arteries place pressure on the developing airways, causing the cartilage that normally holds them open to actually force them closed. Too many details, I know, but bear with me.

I left the hospital that night thinking that Teague needed some treatment and would be good. The next morning, I returned to the hospital to learn that this was extremely serious, would require open heart surgery as soon as possible, and likely would result in a long hospital stay and several additional surgeries as he outgrew his transplanted pulmonary valve. Over the next several days, we spent as much time as possible with him in the NICU. He looked normal, behaved normal, and was quite cute. The staff in the NICU was great. I don’t remember many of them, because it was a whirlwind 6 days. On the 6th day, it was time for surgery. I knew it was a big surgery, but I wasn’t prepared for how long it was going to take. They give you a pager, and tell you to stay within a certain distance of the hospital and they would page you when they were done. YEAH RIGHT, like you’re going to leave the hospital when your 6 day old son is having heart surgery! We said our goodbyes to him as they wheeled him away, just in case. In that moment, I had the most helpless feeling a man can have. I had to let go of my son, knowing that I had no control over anything that happened to him from that moment forward. And I could do nothing to help my wife either. Longest. Day. Ever. 8 hours later, the pager goes off. We rush up the doors of the Pediatric Intensive Care Unit (PICU) to meet him. We didn’t know it, but the PICU was going to be our home for the next 5 months and a week.

Nothing can prepare you for seeing your newborn after open heart surgery. The chest tubes, and pacemaker wires, and the chest being open (sealed with surgical plastic), and the swollen body. Yet again, helpless. We were in the PICU open bay where they care for kids right out of surgery. No privacy, multiple patients. Awkward parents, all not knowing how to interact. Over the next several days, progress was made. They were able to close his chest. Remove 1 chest tube at a time. Take out the pacemaker wires! And finally, remove the staples. Minus the breathing tube, he looked like a normal 2 week old!

We began to notice the other parents that had been in the PICU a while. They gave us tips, advice, encouragement. You became close, members of a small fraternity, only you didn’t choose to join this fraternity. We didn’t know it, but soon we would be the senior parents on the floor, watching parents come and go. Some taking their kids home healthy, and some suffering the cruelest fate a parent can face. It was after the first child died when we were on the floor that the thought that my kid might not make it hit me. We were taking classes on how to care for him at home, and learning what insurance would cover of the at home nursing, that it dawned on me that we could suffer that cruel twist.

While your child is in the PICU, you spend almost all your time at the hospital. I was in the Army, and they told me my place of duty was at the hospital. I called and checked in every morning and afternoon with my commander. My wife “telecommuted” from the hospital room. My dad lives less than 5 miles from the hospital, so we took up residence in his basement, thinking it would be a short stay. After a while, it became apparent that this was a long-term stay so we hopped on over to the Ronald McDonald House. This place, and those people, are Saints. I am no fan of McDonalds. But the facilities they provided were a life saver. We were a 2 minute walk from the hospital. They had food and drinks available 24/7. They “catered” dinners during the week from the local culinary school. The Ronald McDonald House allowed us to spend as much time as we could possibly spend next to our son. It is not a good charity, it is a GREAT charity. Wonderful. Heaven-sent. I never want to spend another night in one, but it was a godsend, and I will be forever grateful for what they provided.

After 2 weeks, we got a “private” room! We had a door we could close (it was glass), a curtain we could pull, our own bathroom with shower (important later in our stay). Not long after we got our room, it was time for another surgery. He got his tracheotomy! For the first time since the operating room, I could look at my son and see no tubes coming out of his mouth! It is these small victories that become monumental moments when you are living in the PICU.

Over the next months, it was a yo-yo of emotions: good weeks where he could sit up in a reclining chair, bad weeks where he was septic and swollen and sedated. See, the absent pulmonary valve syndrome created a vicious cycle: In order to heal, he needed to grow; in order to grow, he needed his airways open; to keep his airways open, PEEP pressure needed was too great to allow growth; the PEEP pressure caused the blood flow back to his heart to slow. He developed clots in his IVC requiring catheterization to break up. Clots would come back. The days he was really septic, we spent 24/7 in the room. We would make beds out of blankets and sleep on the floor (against the rules, but we did it). We ate food in the room (again, against the rules). I watched Phil win his first major at Augusta, Maryland win the ACC Tournament, Dale Jr win his Daytona 500, and the Redskins suffer through Steve Spurrier.

In April, it started to become apparent that we were coming to an end. Not the end we envisioned or hoped for, but an end to suffering. His body was telling us he was done. We called the grandparents and had them come say their goodbyes. On April 23, 2004, in the early hours of the morning, Beth and Julia (the nurses we grew closest with) readied him for the end. They made him comfortable, and ensured that he wouldn’t feel any pain. At around 2:00 AM, in the arms of his loving mother, the support keeping Teague alive was withdrawn. At 2:23 AM, and April 23, 2004, my son, my proudest accomplishment to date, my pride and joy, died. On the morning of May 1, 2004, in a family cemetery in the hills of Ansted, WV, we laid our little boy to rest. I will never forget him. I love him as much today as I did the day he was born. I miss him so much it aches. I can’t wait until that day I get to hold him in my arms again. And I wish he could have met his little sister.

To the doctors of the PICU, Dr. Stephen Keller, Dr. Craig Futterman, Dr. William Stotz, Dr. Keith Dockery, and Dr. Peter Grundl, thank you for the time, effort, care, and patience you showed to Teague and his parents. To the nurses, Beth, Julia, Elizabeth, Cara, Grandma Kathy, Kathy, Jen, Valtarice, Denis, we will never forget you guys and will be grateful for the time and friendship you provided in our time of need. The outcome wasn’t what we wanted, but we know you all did everything in your power to get us home. Thank You.

That is our story. If you can find it in your heart to support our team with a monetary donation, it would be greatly appreciated. I don’t want any parent to have to experience what we went through, but these facilities and services will serve them well if they are needed.

About Our Organization

The Star Kid 5K Race and Family Fun Run/Walk benefits the pediatric heart program at Inova Children's Hospital.

Inova’s Pediatric Heart Program is nationally recognized and one of the largest, most successful programs in the mid-Atlantic region. Every year, we perform more than 300 cardiac surgeries on children of all ages, including fragile newborns facing complex, challenging health problems.

The Pediatric Heart Program's overall mortality rate is 1 percent – an impressive statistic compared to the national average program mortality of 2.9 percent, based on usual case outcomes from 11 congenital heart surgery centers in the United States.

From 2006-2012, proceeds from the Star Kid Race supported the Akl Pediatric Heart Endowment. Named in honor of the late founder of the pediatric cardiac surgery program at Inova Children's Hospital, this endowment is intended to help our cardiac program continue to grow, building the technology and expertise to meet the complex needs of our patients. The endowed fund was established to provide support for professional and continuing medical education; research; patient and family support; education, advocacy and community health programs and special pilot projects in the area of pediatric cardiac surgery.

Proceeds from the 7th Annual Star Kid 5K Race will again support the Akl Pediatric Heart Endowment and also the Pediatric Heart Fund at Inova Children's Hospital. In the past, the Pediatric Heart Fund has supported the cardiac program in a wide variety of ways, providing the following items:

• Essential equipment such as magnification loupes and probes that our surgeons use during procedures

• Patient education materials

• Family support programs, such as reunion picnics and parental support groups

[Bonez3]

Pope-

I'm not in area, but I sent donation your way.

My thoughts and prayers are also with you and your wife and family. I felt your love and anguish and wish you guys all the strength and hope to continue this endeavor.

[Popeman38]

Pope-

I'm not in area, but I sent donation your way.

My thoughts and prayers are also with you and your wife and family. I felt your love and anguish and wish you guys all the strength and hope to continue this endeavor.

Thank you so much.

[Forehead]

This is terrifying and heartbreaking to read, though it does make me more appreciative of having not had to go through it. Having kids makes stories like this really hit home. Let me talk to my wife and see what we can manage.

[smoreese]

Popeman I am so sorry your little boy had to suffer even one minute of his short life. He sounds like an amazing boy who fought as hard as he could to be with you and your wife for as long as he could. Being the father of 2 young kids I can't imagine your pain or loss. In honor of your son Teague I will gladly support you and pass the word along to all my friends as well.

[Popeman38]

Popeman I am so sorry your little boy had to suffer even one minute of his short life. He sounds like an amazing boy who fought as hard as he could to be with you and your wife for as long as he could. Being the father of 2 young kids I can't imagine your pain or loss. In honor of your son Teague I will gladly support you and pass the word along to all my friends as well.

Thank you so much.

[Forehead]

We made a small donation this afternoon. I hope you reach your goal, good luck on your run.

[Popeman38]

We made a small donation this afternoon. I hope you reach your goal, good luck on your run.

Thank you so much. There are no small donations. Every penny is important.

[Popeman38]

I just want to comment that it blows me away that people who know nothing of me or my family other than what I tell them here are willing to part with their hard earned money to support our cause. Especially with the way the economy is now and how I know money is tight for most families, giving money to a stranger's cause is mind-blowing. It is awesome guys, and I can't thank you enough.

[pjfootballer]

[ In April, it started to become apparent that we were coming to an end. Not the end we envisioned or hoped for, but an end to suffering. His body was telling us he was done. We called the grandparents and had them come say their goodbyes. On April 23, 2004, in the early hours of the morning, Beth and Julia (the nurses we grew closest with) readied him for the end. They made him comfortable, and ensured that he wouldn’t feel any pain. At around 2:00 AM, in the arms of his loving mother, the support keeping Teague alive was withdrawn. At 2:23 AM, and April 23, 2004, my son, my proudest accomplishment to date, my pride and joy, died. On the morning of May 1, 2004, in a family cemetery in the hills of Ansted, WV, we laid our little boy to rest. I will never forget him. I love him as much today as I did the day he was born. I miss him so much it aches. I can’t wait until that day I get to hold him in my arms again. And I wish he could have met his little sister.

Not going to lie. When I got to this part, some tears came down my cheeks.

[Forehead]

Re-reading the story, I had to look up where the Ronald McDonald house was out of curiosity. Odd coincidence, I moved into the Archstone townhouse development that's right next to Fairfax Hospital in October of 2003, but I lived on the front row, on Gallows Road. Turns out that Ronald McDonald House is behind the development, I had no idea. Glad they took care of you.

Hope you reach your goal, only a little left to go.

[RiggosMohawk]

I just want to comment that it blows me away that people who know nothing of me or my family other than what I tell them here are willing to part with their hard earned money to support our cause. Especially with the way the economy is now and how I know money is tight for most families, giving money to a stranger's cause is mind-blowing. It is awesome guys, and I can't thank you enough.

You're trying to help kids lead better lives. That's a cause we should all support no matter what. Count me in as another donation.

[Stugein]

Not going to lie. When I got to this part, some tears came down my cheeks.

Yeah, me too.

Edit: BTW, 100% donation goal achieved.

[Popeman38]

I really am floored guys.

[Popeman38]

Well, not the best of days to update this thread, but I need to do it while it is still fresh. The Star Kid 5K & Family Fun Run took place on Sunday, April 14, 2013. The fun run started at 8:30, and the 5K started at 9. Due to construction on the campus of GMU, it was held this year at Fairfax Corner. It was nice, but the space just wasn't there for all the sponsor tents and activities that are normally present at GMU. My wife, daughter, and I took part in the family fun run.

It was nice to get out and support something that has impacted our lives. We go to see the head intensivist that was/is in charge of the PICU, and it was good to talk to him again. Of course, having a child with such a rare condition helps the memory I suppose. I will try to figure out how to upload a couple photos later in the week.

Thank you guys for the support.

[Forehead]

This is separate from what happened in Boston and that shouldn't affect your updating everyone. Glad the event went well (construction aside) and that you were able to honor your son. Take care.