When I see mothers cuddling up their kids, when I hear of another mother back to work from maternity leave, when I see birth announcement emails, when I see Facebook slapping my face with yet another ‘my little one’s first birthday’ pictures, a travel to the parallel universe is unavoidable & imagining how things could have been becomes routine.
I wouldn’t have joined back work in October. I wouldn’t have gone on the numerous vacations that we did in the last 1 year.
If only my TIFFA (anomaly) scan had picked up Ayden’s TGA… If only I had gone to some other Diagnostics Center…
22 weeks pregnant, chose to go to this particular diagnostics center because it’s close to home & they are pretty well-known. In spite of the roads being dug up & heavy traffic, we still go there. Get my scan done in about 15-20 mins & I go home with a clean chit that says “no congenital anomalies seen.” Of course, why should there be any?
In a parallel universe, on our way to this particular Diagnostics center. Since the roads are dug up for the metro rail construction the traffic that day was more than ever, and my husband suggests that we go to another center since we’ve been there a couple of times earlier, and I say that we don’t have an appointment with them, and he still insists that they might still have a slot (because that has happened earlier) since it’s a weekday. So, we turn the car & drive up there & the receptionist tells us that they do have a slot but we’ll have to wait for half an hour, which is fine because we took the whole day off just for this scan.
This center usually takes about an hour for TIFFA scan (a known fact) & we, knowing that there’s absolutely nothing wrong with the pregnancy & the baby, was hoping that they do it faster, and was wondering why they need to take so long. Our turn comes in, and the radiologist does detailed scan. I see my baby up on the screen in front of me, moving.
All along the scan, she tells me that’s the hand, 5 fingers, 2 eyes, lips, 3 chambers of the heart… and she slows down, stops saying anything, keeps moving the apparatus on my bump, trying to get to something on the image. I ask – is everything ok? “Ya, I guess, but let me confirm” – her eyes shrunk as though to focus. Silence. “Hmmm… this might be nothing, but I suggest you consult a pediatric cardiologist. The baby’s heart looks like there could be a small trouble” We panic, she asks us not to, prescribes the recommendation to Dr.X, who’s the leading pediatric cardiologist in the city. Luckily we have a friend in the same hospital who’s in their senior management team. We call him up immediately, and with his help, we get an appointment with Dr.X the same day.
Dr.X does a detailed fetal 2D echo. All ok? – My husband asks. No – he says. He’s known for being borderline-curt. Clearly something’s wrong. After he’s sure of his diagnosis, says – “The baby’s aorta & pulmonary arteries are transposed. It’s called TGA – Transposition of Great Arteries. Basically, there’s no mixing of oxygenated & de-oxygenated blood & that causes trouble. You see there, that’s the aorta; it should have ideally branched from this side.” Greek & Latin. He also tells – “Once the baby is born she/he won’t get enough oxygen from the body to survive. We’ll have to perform a surgery after birth to manually switch the aorta & artery & allow normal blood flow. The good thing here is there’s hole in the heart as well, Ventricular Septal Defect, that allows some amount of blood mixing, so that buys some time.” We obviously look like we are hit by an over-speeding car.
After answering all our questions, he sends us back home with a bunch of papers with image of a badly drawn heart anatomy & lots of medical terms, prescriptions, etc.
We go back home, research online, talk to many other people, call at work & inform them that we are taking a day more off. We cry, search online, join the Facebook group for TGA, ask our concerns there, talk to parents of surviving TGA kids, get appointment with other pediatric cardiologists as well to get second opinion. We email my Ob-Gyn the fetal echo report.
We go to my ObGyn next day, discuss the report with her. I’m put on complete bed rest.
I call my boss & inform him of the situation & decide to either work from home or go on medical leave immediately.
In the next few weeks, with all the intense researches & discussions with doctors that we did, we come into a consensus that we’ll deliver at this particular hospital that has both cardiology & neonatal facilities, meet the team of doctors who will deliver & operate on my baby right after birth.
I eat all healthy food, to ensure the baby is born otherwise healthy. I eat more quantity to ensure that she/he is not born underweight. I drink loads & loads of water to ensure adequate amniotic fluid levels. I do meditation & yoga at home. I call in my parents to come in to help us. We find out about the surgery expenses, insurance, etc.
I go in for my weekly ultrasounds, making sure everything else is fine. At 40 weeks, I deliver my beautiful baby boy via C-section as planned. I get a few seconds to see him & they whisk him away for neonatal care.
They assure us that the VSD is helping him with the blood flow & that we do not need to perform the surgery immediately. We choose a date for surgery the week after.
The surgery is performed as planned. Dr.X is known for TGA surgeries. Kids get flown in from neighboring Afghanistan & Pakistan to him. My boy must be safe in his hands. Surgery goes all fine as he’s otherwise healthy.
A week later, he comes off ventilator & his heart starts beating on his own, his lungs start breathing on its own. All life supports off. Not on sedatives anymore. We get our first cuddle with him.
With a list of his prescriptions & a bunch of all the other do’s & don’t’s we go home with our boy, alive. We inform friends & family not to visit for the first 3 months at least to avoid any chances of him catching infection. We take loads of pictures. We are worried, but happy.
We go for his cardio check ups every month. He gets on track with all his milestones, and he complete 1 year of life on July 2nd.
On his birthday, I, lying next to him, worried about his health & his future life, if he’ll have ay limitations in life, think of the parallel universe – he’s born absolutely fine, like most other kids across the world. I get skin-to-skin with him right after birth. I feed him. We go home on day 3, with just my prescriptions. Friends & family come to visit us. Gifts, cuddles, flowers. Since I’m not in the best of my health to step out, my husband goes & buys more-than-required diapers & clothes & all possible baby care products.
We go for his pediatric consultations like all parents do. He hits all his milestones on time & completes 1 year of life.
And we live happily ever after!