Heterotaxy Choice
Diagnosis: Heterotaxy
By A mom
In January 2013, I chose to have an abortion. My baby girl was diagnosed with diffuse edema and heterotaxy in utero at 10 weeks. We waited, hoping for the best and dreading the worst for week after week and ultrasound after ultrasound. The doctors said the edema could resolve on its own or it could tax the heart so greatly that the baby would die. Edema is swelling, a diffuse edema means swelling all over, which typically means that the heart isn't pumping efficiently. Heterotaxy is when your organs are on the wrong side of your body and can range from harmless to mortal.
At 12 weeks we went in for another ultrasound and a CVS, where they clip out a portion of your placenta to test for genetic abnormalities. At this point we traveled to my family's home in Texas for a two week Christmas vacation. I put on a happy face and told no one what we were going though as I didn't know what the outcome would be. Would my baby survive another day? Did she pass away already? Would I be forced to decide to terminate or not?
No genetic abnormality was found, but that just left more questions. This test told me she was a girl. I named her right away, in utero over Christmas and by myself. I never told my husband her sex much less her name as I didn’t want to break his heart anymore.
After two weeks of the worst vacation ever, we went back to the doctor for another ultrasound. At 14 weeks the edema had cleared, but the heterotaxy was more complicated, the heart was clearly abnormal. He explained that the baby’s stomach was on the wrong side of the body and that the baby’s heart, seemed to have an oversized left ventricle (or small or absent right ventricle.) The heart was still too small to see exactly what was wrong, but all the possibilities were bad. Some were worse than others, most had the newborn baby having several heart surgeries because she probably wouldn't survive outside the womb. Some had the baby dying in utero. Some had her lasting up to 5 years old if she could survive all the heart surgeries, or she could be a miracle, some babies beat the odds. She would never be normal, that was clear, but she was already special.
The doctors wanted to schedule an echocardiogram at 18 weeks, the heart MAY be big enough to see exactly what was wrong, but maybe not. It was also clear from overheard conversation in the hallways that the doctors (even at the genetic center) were not familiar with heterotaxy and they were not prenatal cardiologists. But I couldn't go see the cardiologist until 18 weeks as the heart was just too small at the time for them to determine exactly what was wrong.
I did a monumental amount of research on all the possibilities (heterotaxy, congenital heart defects, etc.) and their mortality rates. But no one could answer the important question. Could by baby survive and be healthy? Or would I just be prolonging her suffering and be subjecting her to terrible surgeries just on a hope and prayer? I read heartbreaking stories of other mothers that had to make this choice. I talked over everything with my husband. But in the end it was my decision to make. In some moments I wished someone else could have made that decision for me. But I knew that I was the only one that could make this life or death decision for my baby girl.
In the end I looked at my current family. I am blessed to have a happy healthy two year old boy and a husband that loves us with all his heart. I had to weigh the soon to be troubled life of my baby girl against the things that her certainly troubled, and possibly short, life would do to the happiness and well-being of my current little family. Would my son grow up with a swapping single parent as one of us would want to stay at the hospital with his sister? Would he have to bear losing his sister at five years old after a lifetime of hospitals? Would one of us have to quit our jobs to stay with his sister? Would we have to sell our house as we couldn't afford it with only one income? Would we have to move to a cheaper state? How much of his college fund would go to hospital bills? How much of his happiness would be lost to heart wrenching surgeries and hospital stays? Should I wait 3 more weeks to see the cardiologist to see if they could give her any better odds?
There was no easy choice. At 15 weeks I had my abortion at a hospital. It is the worst decision of my life, but I made it in with the best information I had and I know it was the best decision for my family.
I now pee on a stick every month just hoping that we will be blessed with another healthy baby soon. Heterotaxy is a 1 in 10,000 chance. I hope I never have to make that decision again. Heart defects do not always accompany heterotaxy, but when they do, the odds for early mortality are great. Do your research and know that you are making the best choice for your family, whatever choice that ends up being.
If you are here and reading these posts as a way to come to grips with your decision or soon to be decision, know that a lot of people stand with you. We know this is a heartbreaking choice, but one that some of us are inexorably faced with. Do what is best for you and your family and we will still stand here with you. In their most tender and vulnerable time, a mother should be given the choice. Please protect a mother’s right to choose, because sometimes a heartbreaking choice is the right one for all involved.