The Heterotaxy Network

This is a website that I have envisioned and have been working on for a while now, and although it is still in its begining stages, I do believe that it provides much needed information about Heterotaxy.  Please take a look. 

www.theheterotaxynetwork.com

7 Responses to “The Heterotaxy Network”

  1. So happy to see this site!!! Since our son was diagnosed with heterotaxy almost 3 years ago. I’m always looking for info/support. Can’t wait to read more.

    FYI….our son was diagnosed at 24 weeks gestation with Heterotaxy syndrome in addition to TGA, AV canal, TAPVR, asplenia, and malrotation of the bowel. Despite the diagnosis, he has done remarkably well. You would never know by looking at him that he has such an extensive medical history.

    • Hi Laura, just found the group here n saw your post! We had our son 3 weeks ago n he with many similar medical conditions. Am wondering if we can contact through email? Thanks!

    • Laura, I recently saw your post and my son has been diagonosed with heterotaxy with the excat same heart defects as your son. I am currently 30 weeks pregnant and we obviously overwhelmed with emotions. I would love to hear how your son is doing and how your family got through the difficult time. Please message me.

  2. We are in the same boat Laura… I am so happy to find more info about Heterotaxy. Our daughter was diagnosed 19 wks enutero with Complete AVSD (2x repaired) , midline liver, malrotation, working polysplenia, esophageal duplicaton. I would like to know more about surgeries and other development for our very special babies. Z has surgery on Monday for malrotation. Thanks for creating this website for us!

  3. Hello there – first to those that have lost children – i am so sorry and know how much your children have brought to your lives. We have a little girl (29 months now). She has a ton of antatomical differences – but she’s doing amazing with the grace of God. She’s been through hell and back, like many children has spent months upon months in the hospital and countless surgeries, but she has an amazing strength and gift. She has so many issues it’s difficult to narrow down on a “diagnosis” and it seems we continue to hear different diagnosis (like heterotaxy, even as recent as this past week). We had no idea, prior to birth, even with a high risk pregnancy and regular level 2 ultrasounds. But, I believe that also was a gift (saved us from worry). She’s wonderful now -always will have issues and we will always be nervous a bit about her life expectancy. But she’s past all the odds already so we’ve learned to accept and appreciate every breath. She was born with a lot of her right side missing (including her right lung and all the anatomy to right side of the heart). She has a hypoplastic left lung and she had a left pulmonary artery sling (around the trachea). She had tracheal stenosis and complete tracheal rings which was repaired then fell apart afterwards (she was resuscitated by her docs). She spent 14 days on ECMO, sustained brain injury/hemorrhage, seizures, and now has a VP shunt. Remarkably she is amazing cognatively (can walk/run/see/hear/speak). She’s shocking the medical staff. She’s diagnosed with VACTERL association. V (vertibrea issues) A (imperforated anus) – no corrected yet given other life threatening airway issues. C (Cardiac issues – PDA/ASD closed at this point, dextrocardia, absent pulmonary artery/veins, TE (essentially a very rare deviation from this including the trachea and missing lung anatomy) R (fortuantely nothing renal) except unusal shape kidneys/bladder/liver issues but all functioning currently. and L (finger issues – right thumb is hypoplastic). Right now we try to keep her germ free like many of you and we try our best to stay out of the hospital. She goes regularly by squad and then stays in critical care for the smallest of issues. All in all however she’s doing amazing and we love her so much. I believe the love and care of families can pull children through the toughest of times. My best to all of you with special children and families – the pain is difficult but the joy is also something unbelievable. March will be her pull through procedure with Dr. Pena (Cincinnati Children’s Medical Center) we were recently provided the ok from her airway docs to even go through with this upcoming surgery.

  4. I’m not sure if this site is still active. However there is hope for those with Heterotaxy syndrome. I am an 18 year old girl diagnosed when I was 7. I suffer from a lot of stomach issues, but I am able to hold my own. I really feel for those of you that have lost children to this syndrome.

  5. Hello,
    I am very thankful for this site so women and families can have a rough idea about this syndrome. My husband and I lost our daughter going on 2 months now from Heterotaxy Syndrome. I found out when i was 18 weeks pregnant that her heart rate dropped down too 55bpm from 140. I had no idea what was in store for us ate at all until we saw the heart specialist n it was layed out on the table of what our babygirl had. The worst news a first time mother can get, we new that she had a 50/50 chance of not making it. We gave her that chance, which i am thankful for everyday even though she may not be with us, she will always be in our hearts.

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