Thursday, July 22, 2010

Q&A with a 20-year-old HLHS College Student!

I'm sure several of you watched the ABC show BostonMed a few weeks ago when the episode featured a family expecting a baby with HLHS, right? I watched it. And honestly I was disappointed that it didn't provide any time lapse information so viewers had at least a little clue as to how long the Peerless family was in the hospital with their son, Sam. In my opinion, it went from birth, to an emergency surgery to discharge and then suddenly showed video from their home. It never once indicated how long the family was in the hospital, the fact that the baby had a second scheduled heart surgery (the Norwood) and didn't show any obstacles or struggles with feeding or any other area of the baby's recovery. I was disappointed to say the least. Again, in my opinion, ABC (through their wonderful editing) made the HLHS journey come across like a walk in the park.

I spent some time reading through the various comments on the Peerless family's patient page on the BostonMed website and honestly it seems apparently I'm the only one who felt the way I did about how ABC represented this family's journey. I know they had a very rough time, obviously any family in this position would have a scary and uncertain future ahead of them and I know first-hand (as do several of you) how difficult it truly is. So again, let me emphasize that I'm disappointed with how ABC represented the story and in no way have any ill feelings toward the Peerless family. I am ecstatic their journey with little Sam has turned out so well and am so pleased that their family is together (i.e. her husband is no longer deployed).

Anyway, I say all of this to tell you that while reading through the comments, I came across a comment from a 20-year-old HLHS college student named Tom. He provided his email address in his comment to the Peerless family, so I decided to email him, hoping he wouldn't mind my "stealing" his contact info from ABC. :)

I was pleasantly surprised, overwhelmed and utterly encouraged by the response I received from Tom. I asked for his permission to share his thoughts/comments and answers to my questions here on the blog, and he was so very nice enough to oblige. Thank you again, Tom, for your generosity!

Here we go!

Here is Tom's story, in his words:
"I was born (first child to my parents) in 1990 in the San Fransisco Bay Area and diagnosed within hours with HLHS. I am not sure what the hospital was called but I was transported to UCSF where I underwent my first step of surgeries. I had the norwood and glenn at UCSF with Dr. Haas which was supposed to be 2 surgeries but because of complications was actually 4. My last open heart surgery was done at CHOP (Philadelphia) which was the Fontan with Dr. Spray. I am not sure how many catherizations i have actually had but I actually have one this thursday at phoenix childrens hospital. All of my caths have been done for mainly 2 reasons. 1. To get images, data, and information about what is going on in my heart that is difficult to get other ways and 2. to perform small procedures as in placing a stent or a balloon in the heart.

I am currently on 3 medications; coumadin as a blood thinner, digoxin for my heart rhythm ( i have been known to have heart flutters) and enalapril for the blood pressure in the aorta.

So thats the logistical for me, I feel great ! I have lived nearly a normal life with just more restrictions on certain things...less caffeine, less athletics, sports, etc. I played sports until i was about 10 though....just recreationally and with friends and still play some sports with my friends. I just have to make sure I know my limits and my friends respect that which makes it alot easier. I am a college student entering my junior year this august. I am a physiology major hoping to enter medical school soon ! my cath this thursday is simply a checkup on my heart to see whats going on since they have had a difficult time getting images via MRI because of the metal coils in my heart."

After sharing his story, Tom was nice enough to answer my questions:
  1. I'm curious if you have any older or younger siblings, and if any of them have any heart issues?
    • I am actually the oldest of 4 and my sisters and brother have not had ANY other issues; heart or anything.

  2. Did you have a similar series of surgeries like they're doing today? Norwood, Glenn, Fontan?
    • I have had 5 open heart surgeries as of now....the norwood was 3 for me because of complications, the glenn, and fontan! exactly the same but probably go more smoothly now haha

  3. How much of your early experiences/surgeries do you remember?
    • I do not remember anything from my open heart surgeries...its been about 13ish years I think since my last open heart surgery but I do remember some from my catherizations since I have had a few the past few years and one this thursday...its not traumatizing or anything but I do get scared before I go under anesthesia a little. but being the future doctor that I wanna be, I know that medicine and my doctors willl do the absolute best for me so I don’t worry too much.

  4. What was the hardest thing for you as a child growing up with HLHS?
    • I will say that junior high was by far the toughest....boys being boys and being that age is tough because people are sooo critical of each other. I was always embarassed of my scar which I now know is not at all a big deal, in fact, girls dig scars lol.....I also LOVED sports so having to let go of them around the age of 10 because of how competitive they became was also difficult. I had to get over the kids teasing me and stuff in PE class but honestly, after junior high, it was easy because people understood.

  5. If you have siblings, did you feel you were treated the same as they were? Would you have wanted to be treated differently?
    • I have been treated the exact same as them...I mean obviously after a surgery or something ill get special care but other than that, everything was the same which I really appreciate because as HLHS children, we just wanna be as normal as possible.

  6. Did you get sick often as a child, or did you stay relatively healthy when it comes to colds, flus, etc.? If you did get sick, how serious was it?
    • I actually have had a great immune system and hardly ever get sick....when I was a child my parents did everything they could to keep me from getting sick so it never really happened but when I do get sick, its nothing worse than a normal flu or cold.

  7. If you could change anything about your experiences over the past 20 years, what would you want to happen differently?
    • I would not change a thing honestly. and if somehow I could take HLHS away, I wouldn’t because it has made me a MUCH stronger person and I would not be the person I am without it. it has taught me a lot about life and has really opened my eyes to life in general. and my interest in medicine has become a result of HLHS.

  8. What prognosis has your cardiologist provided for your future?
    • I have not really spent the time talking to my doctors about my future that far down the road. The problem and reason that this is the reason is because I am one of the oldest children with HLHS still living....I think the absolute oldest is mid 20s. as bad as it sounds, my "generation" of hlhs patients are like the guinea pigs that are almost like the test material that they learn from....this is why I still see a pediatric cardiologist, because cardiologists don’t know much about our diagnoses and futures. but, as my generation continues to grow older, we will learn more and see how long term effects our hearts.

  9. Just curious... how did your parents handle your diagnosis and surgeries?
    • my parents handle it well actually....I don’t have memories of my open heart surgeries but as for catherizations they act normally leading up to the day but when I get taken back and stuff for the anesthesia, my parents do shed some tears and get nervous....kinda like I do too though. but they handle it well.....probably better than when I left for college lol

      hopefully i gave some good information for you...i know just how hard it must be for you and how much you worry about your child but trust me, medicine is so great right now....i mean, i was born in 1990 and i have been amazing! nearly normal life....just a few bumps along the road.
What an amazing blessing and encouragement Tom has been to my family and I with his open and informative response! I hope and pray he can be a blessing to you, too!

Tom was happy to have me share his email address in case you'd like to contact him yourself and ask any other questions. He's super nice and I just can't get over what an encouragement his story has been to me! You can email Tom at glenntm3(at)cox(dot)net.


  1. How great was that!?!? I love his attitude. Just awesome. I'm going to link this to my blog because it is too good not to share. Thanks Kathy!

  2. Amazing! I got an email from him as well. I didn't want to copy and paste it without his permission, but that is what my "such hope" post was about! He is such a blessing! :o)

  3. That is so awsome to read! What a great attitude and his responses make me feel good about our HLHS kids! Thanks so much for posting.

    Mommy to Colin, 15 months, HLHS

  4. What a great post and thank you so much for sharing it with us! I enjoyed hearing his perspective on this journey. I have been fortunate enough to talk with other adult CHD survivors and it is such a gift to be able to ask them questions. I have yet to meet an adult living with Logan's defects and had smilier surgeries. Which worries me at times but I know that there has to be someone out there like him. Glad you were able to talk with him!

  5. How amazing is this guy!!! Thanks for sharing his words of encouragement and story. It brought me to "happy tears" to read how well-adjusted and normal he is. I always worry about Maddie's future and reading this, just brings that hope and calmness I need. What great questions you asked too...all of them are ones I've wondered about. Have a great weekend!

  6. Just wanted to let you know that I pasted your post on my BLOG because I thought your post was so AWESOME and encouraging! Thank you for taking the time to share this... it was great to read..... I had to pass it on....

    Tina B.
    Mom to Anna Grace (HRHS)

  7. Hi! My name is Lauren and I'm an almost 23yr old CHD survivor. I have Tricuspid Atresia, HRHS.

    Someone posted the link to this interview on their blog. I read it and that is so awesome you found a HLHS adult that gave you hope!

    When reading it there is one thing Tom got wrong, the oldest living HLHSer is in the mid 30's to early 40's.

    Here is a link to one of those HLHS Adult's:

    Skip to 19:45 in the video, that starts off Brain's story. He was 32 when this aired, he is 34 now and has HLHS. I thought you might like to see this.

    God Bless Tom! And your wonderful family including your brave and amazing CHD warrior, Chase!

    Heart Hugs!

    With LOTS of HOPE, Love, and Faith,
    Lauren (CHD Survivor)

    P.S.: You can talk to me anytime!


  8. My granddaughter is a HLHS survivor. She is 18 mths old and and is doing very well. She just had her G-tube removed even though we haven't used it in over 6 mths. I also, found myself glued to the televison with an intense interest in the story about the Peerless family. I was so disappointed that it was presented as "no big deal". It's an extremely big deal. It's a rough road to travel for babies born with this condition. But with all the advancements in medicine they have a much brighter prognosis and future.

    Even though I wish our Lilly didn't have HLHS we wouldn't take the world for her. She is such a blessing. God gave her to us for a reason and we thank him everyday.

    I wish all HLHS much success and love.

  9. My 18 yr old daughter is an HLHS survivor too!! She is amazing. She graduated from high school in June. She did struggle with learning issues and speech and language delay but now talks (non-stop!!). She drives, she's working as a nannie. Planning some college next yr in a program suited to young adults with learning issues. She had her Norwood at 30 hrs old, her Glenn at 5 months and her Fontan at 3 yrs. Since then her health, considering the severity of her heart, has been pretty darn good. We were actually happy when she had her appendix out at age 14 and broke her ankle at age 15 and needed surgery for that!! Those were somewhat normal hospital experiences!! We went to BCCH in Vancouver, B.C. for those surgeries and it always felt like coming home. She graduates to the adult cardiologist in January 2012!! Her own paediatric cardiologist will follow along with the new doctors for a few yrs!! Happy, healthy new year to all HLHS families!!

  10. Hi my name is ashley anderson and am 15 years old my brother has hlhs and he is now 12! we look just alike we even act alike i love him and my parents treat us the same to. My brother has had 6 open heart surgeries it is scarey! i cry nobody wants to see your brother like that. Some days my brother comes home from crying from school he ends up laughing in the end because he knows this will make him stronger for him to become a WWE SUPER star! since he cant play sports he is a manger to wrestling and basketball! My mom is trying to get all the kids with the same problem and let them know that their not the only one

  11. Holly Saunders Mckell..lived to age 37 or 38 w HLHS. She developed lung and liver failure due to her CHD..the last few years of her life...due to the comorbitities...and weakened condition...she was rejected for transplants. She died in 2011. You can read about her life ....she had a blog on blogger called the Mckell spot...GOOGLE her name

  12. Awe this was such a nice blog! Thank you for sharing. I started a blog a few yrs ago but never really wrote much on it. But I want to start blogging more now. I've been searching for HLHS survivors. It's always good to hear about those of us who are still doing well.