The Heterotaxy Network

First, I am sorry for my lack of updating this blog lately.  I have been focusing much of my attention on getting our new Heterotaxy Network site up and running.  This is incredibly important to me.  This syndrome is so rare that in order to really understand what is working for them and what isn’t we need a website to be able to share information with each other.  We have run into some hiccups…( 3 web designers in row committed to the job and then backed out) but we still have a developer and a fabulous user experience expert (thank you Maria!) and we are determined to get this site up.  The site is going to include a memorial page for our Heterotaxy friends that have passed away, as well as inspiring stories of hope.  We are going to get our own forum up so that we can talk and ask each other questions, and have a collective (and current) source for all Heterotaxy related research and publications. 

When I was given the diagnosis of Right Atrial Isomerism/Heterotaxy Syndrome at my 20 week scan, I immediately went home to do as much research as I could about this defect.  I know enough about the medical community to know that not all doctors, surgeons, and hospitals are created equal and that I was going to find the best team I could for Logan.  There is so much that I can’t control in this world but I knew I could take some of the control back by finding the best team I could. 

When I first googled Heterotaxy Syndrome I was stunned. There was NOTHING.  There was obscure research articles and publications using abbreviations that I didn’t understand.  There was no statistics, no answers, almost no information at all.   So I did what any stressed out, neurotic woman would do…..I went to www.amazon.com and searched for books about pediatric heart surgery, pediatric heart defects, congenital heart defects, open heart surgery, and many more.  I ordered a stack of books….and I read….and read. 

FOR MONTHS.  I studied all things heart related.  And then I read this book….

Walk on Water: The Miracle of Saving Children’s Lives

 

http://www.amazon.com/Walk-Water-Miracle-Saving-Childrens/dp/0142004111/ref=sr_1_2?ie=UTF8&qid=1320894829&sr=8-2

If you do one small thing that will greatly improve the outcome of your child’s care it is this….

READ THIS BOOK. 

 I know that all of this is scary and I know its easy to bury your head in the sand, but it turns out….we have every reason in the world to be terrified, scared, and to question our doctors.  This is a very hard book to read.  It is so real, it is exactly what we go thru…the only difference here is that you get a glimpse of the other side.  What the doctors think…what they are not telling us.  

And what they are not telling us is frightening. 

We must educate ourselves so we can advocate for our children.  I the last few months I witnessed heroic heart repairs from surgeons and heart centers that fight till the very end for our kids. And then I have seen the exact opposite.  Heart centers that just give up.  They don’t try….they say it’s not worth it, it will be too hard on your family, it will be too much for your baby to go thru……

 Logan has the worst heart defect you can have and has had all the even worse ‘Risk Factors For Death” as stated in all the publications….and he is alive and he is happy.  Was this luck? NO Was it Fate? NO  It was months and months and months of obsessive reading, studying, and analyzing what would be the very best care for Logan.  I sought opinions from multiple hospitals, surgeons, and pediatric cardiologists.  Everything in the literature said that RAI/Heterotaxy with Severe AV valve regurgitation was a death sentence.  So I took him to the best pediatric heart valve surgeon in the country (Dr. Del Nido – Boston).  Logan now has NO regurg in his valve.  He also has small pulmonary arteries (the tube that brings oxygen to the lungs) and acquired Pulmonary Vein Stenosis ( all “Risk Factors For Death” in RAI/Heteortaxy). 

There are experts out there for various defects.  Like Dr. Del Nido being the foremost expert on pediatric heart valves, and Dr. Frank Hanley (Stanford) being the world expert on correcting MAPCAs (when you don’t have one tube taking oxygen to your lungs but a bunch of very tiny ones)  but how do you find this information?  What do you do when you get the diagnosis of Right Atrial Isomerism & Heterotaxy Syndrome and google it and there is nothing there???

This is why The Heterotaxy Network is so important.  Not just for families here in the US but for families from all over the world.  There is hope.  And by bringing us together and sharing stories, and resources, we can help each other, we can help the doctors.  There is so little they even know about heterotaxy.  I can’t tell you how many times a family has shared that their pediatric cardiologist had to GOOGLE heterotaxy before having a family conference.  And what good is googling heterotaxy when there is nothing there? 

But none of that is even slightly as upsetting as the discrepancies between pediatric heart centers.  In a world of sadness, loss, grief, and tremendous responsibility that we hand over to our trusted doctors, it turns out that many times our precious child is not the priority. In many cases politics, ego, money, resume building, paper writing, conference speaking, and administration pleasing are all the priorities that come before our children. 

We need to be their voice. 

Many, many, many pediatric cardiologists have come out of the woodwork to agree with what I am about to tell you right now.  There are less than a handful of surgeons that they would let come near their own child if they had a diagnosis as complex as Heterotaxy Syndrome. 

Can they tell you that? NO

Will they lie to your face? YES

When you ask them…”what would you do if it were your child?”

9 times out of 10 they are not being completely honest.

But it It is not all about the surgeon anyway.  Was it extremely important to find Dr. Del Nido to fix Logan’s AV valve? YES But equally important was the skill set of the nursing and CICU team that cared for him afterwards.  Heterotaxy is incredibly rare and unless you have a team of nurses and doctors that are versed in all things heterotaxy your child will likely get into big trouble in a variety of areas….(sepsis, vent dependence, feeding issues, low nitric production, just to name a few…) Heterotaxy kids are so much more complex than just a heart defect, you need to find a center that has a good pulmonology, gastrointestinal, CICU nurses, infectious disease, and a hospital that has made a (real) concerted effort to reduce their infection rates (infection is the second leading cause of death for our kids….)

My goals for The Heteortaxy Network are very simple.

1. Connect Families all over the world with this illness

2. To provide a comprehensive resource of all things related to Heterotaxy for families as well as clinicians.

3. To help facilitate a change in the outcomes for our children.

Please stay tuned for more information about The Heterotaxy Network, how you join, how you can help, and how you can connect with other families in your country.

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6 Responses to “The Heterotaxy Network”

  1. Great post! This is something all of us need to remember…they are our children and we need to make sure we know what is best for them. Even though Hope does not have Heterotaxy, we have gone through so many of the same things. I am so thankful I did not listen to the doctors and that we have had Hope in our lives for over 2 years!

  2. Wow.That is amazing.I think all heart parents could possibly look like they have a medical degree but the reason for that is that we have had to find the best drs and hospitals for our children.It truly is amazing what we have learned on our journey with Broc.We never knew having CHD was connected to so many other issues.You truly are an amazing moma for Logan.

    • Agree! What we go thru is unbelievable. Literally, you wouldn’t believe it unless you had first hand experience. Its an insane life.

      • Logan (and Ethan too) was very lucky to get you for a momma- it is amazing what you have done, not just for him, but so many other heart babies and parents! Love ya sweetie!

  3. I am one of the lucky ones. I have dextrocardia, heterotaxy w/asplenia and a vsd…and thanks to my parents, I have led a happy and normal life. I even have 2 beautiful daughters who are healthy as can be. When I was born, they knew something was wrong, but they had no idea what it all entailed. My parents opted to not do heart surgery, against doctors reccomendations, and here I am today…alive and well. I had battles with health and still do…but nothing major. I get sick more often and it hits me harder, but I know how to take care of myself to make sure that I get what I need. I know most stories aren’t like mine, and I have met others like me through the years…but they had several surgeries and health issues that I was lucky enough to miss out on. However, if I did become ill, had severe pain, or even a broken bone, doctors didn’t know how to treat me because “I just wasn’t normal”. What was normal for my body was an unknown! I would like to learn more about others who have and/or are living life against the odds, and I am so glad that this site is bringing awareness, not just to our world, but to our doctors! Thank you! :)

  4. Thank you for your posts and the time, effort, energy, and emotions you’ve put into this blog. I have a beautiful little boy- Samuel (6 months) with Heterotaxy that will undergo his first heart surgery in January (Glenn). When I first got the diagnosis in utero I came across your website and since have read it on and off- initally it was difficult to process all that we’d have ahead of us…. difficult to put into words the stuggles we see in the future for our son. Since then it’s become comfort to know there are others like us! Others that face this world with lack of information about our child’s condition and that are striving to educate ourselves and make the best decisions and to advocate for our beautiful children. We are lucky to live in an area that has a Children’s Hospital ready and willing to tackle our son’s cardiac diagnosis- it is difficult to read there are so many that weren’t given that opportunity. I look forward to the furture of the Heterotaxy Network- thank you for sharing your story with us.
    PS- My husband and I are both reading the book as well.

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