4.22.19
“Sometimes they have us call patients back in because your primary doctor just can’t get a good image of everything we need to see on the original ultrasound and sometimes they have us call you back in because there is something else going on. That’s the case here.”
Everything from the completion of these few sentences seems to be like an out of body experience. Like I am observing someone else’s life from the outside looking in. I couldn’t help but stare from the screen to Josh and back to the screen barely comprehending the words that the doctor was telling us.
Trying not to see the “hole” in my baby’s heart that she was showing us. Watching my husband’s head, heart and shoulders sink, while trying to keep my hope up and alive.
“Have you ever been given any reason as to why you have had your previous miscarriage? They didn’t test you or anything? Have you tested for Down Syndrome or any of the the other genetic defects in this pregnancy?” Her questions intruding my already breaking heart in tortuous slow motion every word hanging there longer than it should, as my own questions were wanting to fly out of my mouth as fast as possible, but with only the ability to articulate a few.
“So, what does this mean?”
“These results lead us to believe your baby has a rare congenital heart defect called Tetralogy of Fallot — which is a combination of the four different defects of her heart that I have shown you. Sometimes, this defect is linked to other chromosomal abnormalities, such as Down Syndrome, Trisonomy 13, 18 or 21 or could be any other genetic mutations. Since we haven’t received any testing for these from you so far, which is fine, we need to go ahead and do that today. [...] Your options are through a non-invasive test called NIPT which will only test for the 4 major genetic defects I mentioned or with an amniocentesis which will be a full panel and tell us everything we need to know. [...] There is no risk to the NIPT test as it is a simple blood draw of your blood; there is a risk with the amniocentesis because it actually draws blood from your baby. There is a 1 and 300 chance your water could break and it would result in miscarriage for you at this stage of pregnancy. We are also going to refer you to a Cardiologist immediately as she will need heart surgery for survival. They will call you in the next few days for an appointment.”
My already breaking heart shattered. The world was spinning faster than normal and the room closed in on us. Josh had to briefly step out to catch his breath.
We were not prepared. This wasn’t our life. This wasn’t happening to us, this wasn’t happening to our baby. This can’t be our reality, can it?
I opted out of the amniocentesis, as I needed time to process what we were hearing. We hadn’t prepared to make decisions like this today. We didn’t know anything at the moment. All sense of understanding fleed us within the previous 5 minutes... And, mainly, I wasn’t willing to risk anything else with my child. I just wanted to protect her and not let anyone or anything else touch her — no needles, no dopplers, no ultrasounds.
The doctor left the room and I immediately stood up and collapsed into Josh’s arms. My knees were weak and I felt more numb in that moment than I think I ever had. A rush of tears flooded our grieving faces.
“Lord, please, no, please. Make our baby’s heart whole.”