Need Advice? Ask Your Question

Questions & Answers

Category: Newly Pregnant

Asked by Jen435

Q: Heterotaxy... advice.. comfort.. please??

I went for a normal ultrasound at 13wks 6days. The tech started doing an anatomy scan that they would do at 20wks. She showed me the arms, hands, legs, feet, face, mouth opening/closing, the nose was sooo cute!!!! Then we listened to the heart hrt beat was 153. She said it was nice and strong. Then she started looking around at other stuff. She told me baby was 85mm??? I think it was mm maybe it was cm... she then told me to hold on and left the room. I waited there for 10minutes and a genetic doctor came back with the tech. She introduced herself and said she want to see the baby because it had perfect anatomy. The tech printed me out a ton of pictures and then the doctor grabbed my arm and told me unfortunately the heart has only three chambers in the heart and the stomach is on the wrong side of the body. She termed it as heterotaxy.then she brought me to a room and a nurse came back to let me know I was being referred to chop. Please any advice information kind word are appreciated

This question was asked May. 6, 2012 2:44am
Category: Newly Pregnant

Answer This Question

Answers (11)

Answered by a member - May. 8, 2012 2:47pm

You can also look me up on facebook. I am part of the heterotaxy community because of my daughter Chloe. You can also connect with other parents of children iwth heterotaxy communty. We are a great group of parents. Kristen Spyker is the founder of The Heterotaxy Network. She is amazing.

I am part of a foundation called Heterotaxy Hope Org. You can also find us on facebook.

I hope this helps. - ana

263 out of 529 found this answer helpful

Was this answer helpful? Yes No

Answered by analuis71 - May. 8, 2012 2:42pm

You can find parents of children with heterotaxy on facebook
https://www.facebook.com/#!/pages/The-Heterotaxy-Network/175957265777460
https://www.facebook.com/pages/The-Heterotaxy-Network/175957265777460
Here is a brochure on heterotaxy hope org - http://www.heterotaxyhope.org/wp-content/uploads/2012/05/Final-H20-Brochure.pdf
My daughter is 9 years old and she has heterotaxy syndrome.

267 out of 525 found this answer helpful

Was this answer helpful? Yes No

Answered by knicole27 - May. 6, 2012 9:38pm

They will most likely want to test for DS and trisomy 18 and yes there is a" likely hood" as they say of these defects tying in with these genetic defects BUT... the handful of ladies stories I saw including the one I know, their babies/children have heterotaxy without any other major genetic defects like DS etc. I am sure though that because of the possible heterotaxy they will be automatically looking for those marks or precursers to downs or trisomy. Hang in there hun! Its also really early to tell of a lot of things as the baby develops more when you get further u/s which you will because they will want to track and see how baby is doing.. things could change again no u/s is 100% you will only know when that baby is in the world to know more but having the specialized doctors will help for sure. Thinking of you.

275 out of 540 found this answer helpful

Was this answer helpful? Yes No

Answered by Jen435 - May. 6, 2012 9:14pm

thank you sooo much ladies! your replies mean so much to me. We had something cross our mind this morning that is there a way at 14wks + to find out if baby has down syndrome or other chromosomal issues that are sometimes in conjunction with heart defects?

255 out of 510 found this answer helpful

Was this answer helpful? Yes No

Answered by babbosbabymama - May. 6, 2012 3:50pm

I don't know anything about this but I do know that it is really good that they found it early. As long as the doctors know about this, he has the best chance for a normal life and they will be prepared to handle this as soon as he is born. Try not to let this consume you. I know its gotta be one of the scariest things that you have ever been through but you need to be strong and have a clear mind. As far as googling, you can find a lot of important information to ease your mind but I am sure you will also find things to upset you too so I'm not sure if its a good idea. I guess it just depends on how you percieve things (glass half empty or half full). The doctors know what they are doing and have already reccomended you to a specialized facility so you are already headed in the right direction!! Good luck mama. You and your little one are in my prayers!! <3

263 out of 532 found this answer helpful

Was this answer helpful? Yes No

Answered by knicole27 - May. 6, 2012 4:20am

Ok .. I do have a friend that her son has this. He is 18 months old and doing well.. acts like a normal child with the exception that sometimes he turns blue in the lips and fingers and is under weight for his age. However he has had a handful of surgeries. one even at 4 days old. Her advice was to find the best of the best doctors possible that are VERY aware of the condition and find a good support group. There are a lot of success stories out there with the best of possible doctors but she said it is trying because you worry all the time through each surgery. I guess there is a support group on facebook that has adult survivors as well on it. I am sorry to hear this.. at the same time keep faith. I had read a few stories where yes there was a heart problem but it was not heterotaxy but that conclusion was not found until after birth. Ultrasounds are great but are also not 100%. Hoping and praying for the best! :)

266 out of 536 found this answer helpful

Was this answer helpful? Yes No

Answered by looney - May. 6, 2012 3:41am

Found this on Yahoo: Three chambered heart could be one upper common chamber (atrium) and two lower chambers (ventricles) or two atria and one ventricle. Both forms can survive with good surgical treatment, even though there will be some mixing of pure and impure blood in the untreated state. Please contact the nearest paediatric cardiac surgical centre for timing of procedure in your baby's case. Sometimes it will be a multi-staged procedure with an initial procedure to buy time in case of very sick babies.

250 out of 509 found this answer helpful

Was this answer helpful? Yes No

Answered by Jen435 - May. 6, 2012 3:35am

Childerns hospital of Philadelphia I'm being sent for the fetal heart program they have there... praying the genetic doctor is wrong :(

256 out of 514 found this answer helpful

Was this answer helpful? Yes No

Answered by looney - May. 6, 2012 3:33am

what is chop?

263 out of 522 found this answer helpful

Was this answer helpful? Yes No

Answered by Jen435 - May. 6, 2012 3:23am

Thank you. My husband doesn't want me Googling etc... I told him its impossible... but we only have his laptop so ot easy for him to control. My family is making a joke of it and I'm so angry. This is my first baby and i want it to be healthy and to live a normal life. I'm so hurt and beside myself.

243 out of 513 found this answer helpful

Was this answer helpful? Yes No

Answer This Question

You are not logged in.
Log in or Register to post an answer to this question.

Other Questions in Newly Pregnant