There's this clinic called FDS, the Fetal Diagnostic Service. Here's how it works: you're thrilled that you're pregnant, things have been going fine and then you get your routine detailed ultrasound at about 20 weeks in. The ultrasound tech is evasive, won't tell you what they're really seeing, perhaps a radiologist comes in during the scan and mumbles. You figure out somethings isn't quite right. They say you need at special scan at the Center for Excellence Across the River.
A phone call the next day, you have an appointment in Vancouver tomorrow... book the whole day off.
You show up and wait. Then a medical genetics counselor sits down with you and your partner where they extract every ounce of family history you have. Did you have any maternal aunts with crooked teeth? Any distant uncles who died suddenly? Perhaps a sibling who was a little slow on the uptake?
More waiting.
Then an hour long ultrasound. A dim, cool room. Gooey gel, prodding, poking, sliding.
And you wait some more. Then an appointment with the medical geneticist followed by the perinatologist. You sit before them nauseated with anxiety.
There's part of you baby's brain that isn't developing properly, we call it hypoplasia of the cerebellar vermis also known as a Danny-Walker malformation. Prognosis is variable......
I imagine the rest fades into nothingness. Or maybe we say:
Your baby's heart doesn't seem to be forming properly. You see, its missing half the pump, the hoses at the top are backwards and there no pipe going to the lungs.
You're telling me my baby had a broken heart?
Today we had a TRAP sequence... it looks like you had triplets initially but it turns out that one of them is a 'pump twin' with no heart which is parasitising the other two babies. We could insert a radio-frequency do-ma-hickie into the pump twin's umbilical cord under radiological guidance to stop it pumping. We can experiment on you here, or you can always go to Toronto.
My twins are really triplets and one is a parasite?
I have no concept of what they go through, hearing that their dear, beloved child is broken. We often don't know the extent of it before birth or how drastically or minimally it will effect the life of their baby. Maternal fetal medicine is a tough rotation for me. It breaks my heart and blows my mind. We buzz placentas of twin pregnancies if they are growing unequally, when otherwise there would be a stillbirth. We try plugging up holes if your water breaks too early, give you Viagra to help your tiny tiny baby not growing well, give transfusions INSIDE the uterus to babies with Rh disease. Amazing things that give these babies a shot at life when nature would otherwise take it from them. It baffles me, fascinates me and fills me with questions I will never know the answer to.
