Feeling unsure: mModerate Tetralogy of Fallot
I am complete broken right now... Please be kind in the comments!
I am currently 21 weeks pregnant, a very wanted pregnancy (via IVF). Even though I struggled during the pregnancy because of nauseau and tiredness and I am under supervision of a cardiologist because of a heart disease, there were no complications for the baby. However, during the anatomy scan at 20 weeks drs pointed out our little girl had multiple heart defects. After more research it turned out to be tetralogy of fallot. Tetralogy of Fallot. This is a different heart defect from the one I have.
Description of her heart defect:
Both her pulmonary artery and aorta arise from the right ventricle, she has a hole between the ventricles (a ventricular septal defect), her pulmonary artery is narrowed, while her aorta is enlarged. In addition, her aortic arch runs to the right side of her trachea instead of the left.
This is a serious heart defect that will require open-heart surgery. When she is born, she will likely have insufficient oxygen levels and may appear blue (cyanotic). The doctors therefore want to create a small connection (a shunt) between one of her body arteries and the pulmonary artery shortly after birth to ensure enough blood can reach her lungs. They hope this will allow her to grow for a few months before undergoing open-heart surgery, but they cannot predict how she will do after birth. If her condition deteriorates during the home-stay, the surgery may have to be performed much earlier.
She will also need a donor pulmonary valve, which will have to be replaced multiple times throughout her life. This type of heart defect can sometimes be associated with genetic disorders, so I am currently waiting for the results of an amniocentesis. The doctors find it difficult to give us a clear prognosis because every case is different, and it is impossible to predict exactly how she will do once she is outside the womb.
Prognosis:
On academic websites, I read that the prognosis is described as "reasonably good." The conversations with the doctors have also been very focused on, "These are the surgeries and treatments we can do." They did mention that we could consider terminating the pregnancy, but they did not steer us in either direction.
However, the more research I do (I've read as many scientific articles with outcome data as I can find, along with countless personal stories on Reddit, blogs, and other forums), the more overwhelming the future seems. So many surgeries, potential complications, and an intensely medical infancy and childhood.
I've also read accounts from people living with this heart condition who describe the psychological burden of constantly moving from one surgery to the next and always having to monitor their symptoms. Of course, there are also children and adults who die from complications related to the condition or experience severe complications during surgery, such as strokes, brain injury, organ failure, and more.
How I feel:
Everywhere online I see incredibly strong parents who throw themselves into their baby's life with love, strength, and positivity, willing to do absolutely anything to keep their child alive. I always thought I would be that kind of mother. But right now, I don't feel that way.
Since the diagnosis, my world has completely fallen apart, and I honestly don't know if I can do this.
I have always been open to having a child with a disability or medical condition, but this all sounds so incredibly severe that I find myself dreading what's ahead. I also have a 2½-year-old son who deserves my time and attention.
I spend every waking moment gathering information about every possible complication and associated condition she might have. I realize that I'm almost searching for someone to tell me that terminating the pregnancy would be the right decision, but I can't find that validation anywhere.
Instead, I keep feeling that this heart defect isn't "severe enough" to justify ending the life of my precious little girl. At the same time, I am terrified of bringing her into the world knowing what may lie ahead.
I also lost my sister after she spent 17 years seriously ill before she eventually passed away. I know firsthand how much chronic illness affected her quality of life, but also how incredibly difficult it was for my family and me as her caregivers. I wouldn't wish that on anyone.
Sometimes I even wish the diagnosis were clearer—that the doctors tell us these abnormalities are completely incompatible with life—because then the decision would be easier. Instead, the decision is ours to make, and I simply cannot make it.
Time is running out because where I live we have to decide before 24 weeks. I know that my partner and I are the only people who can make this decision, but I feel so incredibly alone in it that I just wanted to share my story somewhere.
Has anyone here had to make a similar decision about whether or not to terminate a pregnancy where the outcome wasn't completely clear-cut? I don't mean situations where it was obvious that the baby would not survive, but cases where the prognosis was uncertain and you truly had to make the choice yourselves.