About

Age 12 months

Age 12 months

Introduction

We are parents of a child with a severe congenital heart defect (tricuspid atresia, hypoplastic right heart syndrome) who has now had three palliative open heart surgeries (5 days, 6 months, 18 months). We are greatly interested in learning more about research following children and adults who have such congenital heart defects as well as understanding the potential causes of these conditions. This blog will detail our readings and interpretations of recent primary scientific literature discussing congenital heart defects. Unfortunately much of the scientific literature on congenital heart defects is not accessible to the general public because it is behind a paywall. This blog will discuss new research about congenital heart defects and try to describe their results and significance in general layperson terms. Describing these results in layperson terms is important to us so that we remember what these terms or concepts mean down the road.

Please note that our opinions and views on these studies are our own and we have no formal medical training so please view this blog simply as an open journal that contains our interpretations of these studies.

This blog isn’t about giving advice, providing malicious information that disrupts patient-doctor relationships, comparing treatments among patients, etc. Obviously each patient and the treatment for each patient is different and we don’t use our experiences as a benchmark for comparison.

This blog is also not about being pessimistic about the future of patients with congenital heart defects. We are optimistic but also like to be informed about the costs and benefits of different medical approaches.

Our Personal Experience with Congenital Heart Defects in Pictures

First open heart surgery (band on pulmonary artery) at 5 days old

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Second Open Heart Surgery (“hemi-Fontan”) at 6 months old

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Third Open Heart Surgery (Intra-cardiac or Lateral Tunnel Fontan) at 18 months

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Today after the heart surgeries

Age 26 months

Age 26 months

9 thoughts on “About

  1. My daughter is 10!she has had 3 open heart surgeries and a pacemaker in 2008.liver fibrosis dx in 08 due to cardiac arrest (?)very interested in learning more too!by the way where did u have her surgeries?thanks leslie

    • Hi Leslie!

      Thanks for your comment. Our daughter is just 2.5 years. She had them all done at CS Mott at U of Michigan. What made it necessary that your daughter needed a pacemaker? Where did she have them done? Thanks for commenting!

  2. My son is also 2.5 with hrhs and pulmonary atresia. He is waiting on on the final fontan. So far his sats are good and he is a good size. He has developmental issues and is quite far behind and had a stroke last month, he’s had to learn to walk and use his left side all over again (but he’s doing it!).. The cardio specialist wants him to wait until he has recovered before the final procedure.

  3. Hi I have VSD &ASD& and hypoblastic right ventricle… I’m 18 now 😉 very healthy studying in medicine school I want to be cardio dr
    I hope your girl grow up with no problem
    I have no pacaker or anything at all.. I just take adpirin daily 🙂

  4. I was pleased to find your blog. I’m a mother of a tricuspid atresia survivor. She is 30 years old and a journalist in NYC with two degrees. While I am completely empathetic to your blog’s objectives, it would be very useful if you are buying research data to paste some of it into your blog rather than using your own prose to address the research. Thoughts? I really don’t like having to pay all this money to the research publications. I wish my daughter had the guts to simply ask her cardiologist to provide his ID so she would get free access. I’ll keep trying, but attempting to objectify the research doesn’t seem all that “objective”. K

  5. We just found out our baby has hrs in our 23 week ultrasound. It is a hard time, and I am very grateful to see that you are doing this and it is nice to see the progress your baby is making. Thanks for doing this

    • Hi Geoff, Thanks for reading and sorry to hear about your baby. As I think any parent of a child with a congenital heart defect can attest, it isn’t easy. Accepting and understanding that this has happened was very hard for us. However, there are also lots of really positive stories and kids that undergo the different surgeries that fare quite well. It also changes your perspective about a lot of issues (generally for the better). If I could change anything prior to our daughter was born, I would have learned more about congenital heart defects and learned more about how they are treated. Best of luck to your new baby, your wife, and you on this journey.

  6. Just stumbled across your blog whilst trawling internet for information in relation to the Fontan as my 3 year old has just had his 3rd surgery (Fontan completion for PAIVS) in the UK. I have found this site very informative and easy to read. I think the education of parents and patients is paramount for raising awareness of potential issues allowing us to ask our consultants more specific questions for these conditions. We can (& did) get lost in the maelstrom of surgery without ever thinking too far ahead about our sons prospects but the journey has not finished it has just taken a different direction and as much as I insist on everyone around us being positive I do not think we should be blinkered about how difficult things might get. This is not what all parents of CHD children wish to do and I respect others opinions and choices but for me I would much rather arm myself with as much information as possible. Our son is doing amazingly well and was in hospital for just 9 days post surgery, would have been out quicker but for pneumothorax. In a room of “normal” children he would not stand out and people are shocked when they become aware of his condition. We have 2 other children and his diagnosis was post natal so it has taken time for us to process all of the information thrown at us but we feel truly blessed and you are correct, your perspective on life changes completely with more focus on the important things starting with family. Thanks for your blog.

    • Hi Kris – Thanks very much for your comment and for reading the blog. I agree that it is better to be fully armed with information about the condition even though it is challenging to digest (sometimes I think it would be easier to just ignore all the info that is out there). I hope to update this blog in the near future but things have just been too busy.

      All the best for your son,

      Ben

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