When we came back from our nine months of furlough in the U.S., it was January of 2012 and Eleanor was 17 months old. After a few months of settling into our new home, we reconnected with the Mothers' Group we had been a part of since Eleanor was born. Out of the ten or so mother-child duos, only three had continued meeting up along with the addition of another mother-son pair that joined the group shortly before our return.
As we continued to meet up week after week, eventually all of the four mothers except myself got pregnant with their seconds. As the months passed and their 'tummies' grew, Eleanor's keen perception and language ability also began to grow exponentially. Slowly, she began to ask questions about the mommies' growing tummies, and I'd explain to her that there were babies in there. Then sure enough, my little smarty-pants Eleanor would take a good look at my flabby-and-pudgie-from-not-having-completely-lost-my-pregnancy-fat belly and would ask, "Do you have a baby in your tummy?"! This went on for - oh boy! - the duration of their pregnancies!
Then, as each of the four babies were born and the mothers began bringing them to our play times, Eleanor became fascinated with the sight of breast-feeding! As you can imagine, I had to answer to her countless hours of repetitive questions, "What are they doing?", "Why do babies eat their mommies 'tchji-tchjis' (Korean baby word for boobies)?", and so on. As if that wasn't enough...each week we got together with the group, Eleanor was more interested in staring at the mothers breast-feeding their newborns than playing with her friends. After her dose of breast-feeding 'lessons', she'd come home and breast-feed her dolls.
Over the months, each time she'd see the babies in our Mothers' Group or any other baby at the park or at the shops, Eleanor would go up to them, tickle their feet or gently rub their cheeks and make comments like "S/he's a cutie!". Once, when the Mothers' Group came over to our house, we mothers were having tea at the table with the babies laying on the sofa and the toddlers just running around playing, and I literarily caught Eleanor quite boldly try to pick up one of the babies in her arms! She couldn't get enough of them; she just loved them to bits!
ALL this to say...I was quite surprised by Eleanor's fascination, love, and interest in babies. We could so clearly imagine Eleanor with a little sibling...I guess that was the extra push that guided us in our decision to try for another baby.
So when we finally found ourselves pregnant in early November of last year, we were beyond overjoyed! As you can guess, our hearts and minds began to imagine Eleanor with a little sibling - playing with...caring for...dotting on...we could not wait to tell her we were expecting a baby! Though we tried to keep our pregnancy quiet, we began to throw a few hints at Eleanor since by then she was nearly 2.5 years of age and already asking lots more questions about babies. When she'd ask me "Do you have a baby in your tummy?", I'd say "Would you like mommy to have a baby in my tummy?", or "Do you want a baby brother or a sister?". We even began praying together for one. Slowly, Eleanor began to piece the puzzle together on her own, and it didn't take long for us to casually let her in on our secret - this was after we had found out the baby's heart rate was normal after the initial scare. Amazingly, Eleanor never spilled the beans to anyone, and most people we saw on a regular basis didn't suspect anything because they already knew of her 'obsession' with babies.
Well, fast forward to January 18, 2013, when at ten in the morning Jim, Eleanor, and I found ourselves sitting in one of the waiting areas of the newly erected and sterile buildings of our local hospital. After thirty long minutes of waiting, Dominic, the Genetic Counsellor who had called us to come in for test results shows up, takes us to a nearby private meeting room, and after a few pleasantries goes on to tell us the devastating news.
Simply put, we were told that even though the nuchal translucency ultrasound result came back as normal, due to abnormal levels of two specific pregnancy hormones, I was found to be at high risk of carrying a baby with a genetic or chromosomal disorder. He proceeded to tell us that if that were the case that, there is no cure for such a disorder as it affects every cell of the baby's body, that it is a fatal disorder whereby most babies are miscarried during the first trimester, that most of the babies that survive to the second trimester are also miscarried before they are carried to term, and of those that are carried to term, most are stillborn or die at birth or shortly after birth, with a very small percentage living past a few hours or days, and hardly any making it to their first birthday.
As i
f that wasn't hard enough news to hear, Dominic went on to tell us that most parents who find out they are at risk of carrying a baby with such a fatal chromosomal disorder, decide to terminate the pregnancy. It was really hard to hear and digest that...Bear in mind that these first trimester tests DO NOT diagnose a problem; they only signal that further testing should be done. As Dominic sat there waiting, giving us a moment to get over our initial shock from the hardest news we've heard, I couldn't help but wonder if he wasn't waiting for an immediate 'response' to his last statement...
Time seemed to have frozen, but the silence was broken as we began to discuss further testing options available, their risks, the time at which they can be administered. We were not ready to make any abrupt decisions; we wanted time to process everything, to gather all the necessary information we needed, and to PRAY! Thankfully, we had until week 20 of pregnancy, and at this point I was 14 weeks along. In the meantime, we were given the option and scheduled to return in two weeks to get another more thorough ultrasound to check our baby's condition, at least as much as they could see so early in the pregnancy, if we weren't comfortable undergoing further testing.
Those two weeks of waiting really felt like the longest of our lives. We were scared, confused, not knowing who to turn to...we had not made our pregnancy known to anyone except our parents and siblings...even though we didn't even know what nor how to pray, we just pleaded to God asking him to help us through it all. We kept the news to ourselves, turning to the only source of information we had...the Internet...and looked up and searched for whatever information we could gather, all the while scared of what the future could hold. We did further reading on the disorder, searched for stories of others who had gotten similar screening results only to discover that it was a false diagnosis...basically we were looking for a glimmer of hope...We had NO IDEA what we were doing. We contemplated asking a few close individuals to pray for us but we thought it'd be best to wait until we got a proper diagnosis.
On February 7, 2013 at 16 weeks of pregnancy, we headed to the hospital again for a more thorough ultrasound at which point one of the senior doctors, who later we found out is a specialist in the area of Fetal Chromosomal Abnormalities, came in to tell us that they had found serious and fatal abnormalities in our baby's tiny heart - one of the markers of the chromosomal abnormality they had screened our baby to have. He explained what the prognosis would be like if the baby is found to have or not have any chromosomal issues and the treatment options for each case scenario. He reassured us that no matter what, that they would take good care of us. We were so thankful to hear those words...
The doctor's recommendation at this point was that I undergo a diagnostic test - even though there is less than one percent risk of miscarriage - since it could tell us exactly what the problem is with the baby and they can make a better prognosis and come up with better treatment plans. By this point Jim and I had already discussed at home that we would go ahead with the diagnostic test. Whether our baby had a chromosomal disorder or not, we needed to know how to fight for her life...Thankfully we were able to have the test done that same day. We'd only have to wait a few days - the weekend - to get the results.
Monday, February 11, 2013 rolled around and we were right back in the tiny meeting room at the hospital to hear that the tests did indeed confirm that our baby has a chromosomal disorder. The thought that we'd have to somehow explain this new reality to Eleanor was one of the things that pained my heart the most...
(to be continued...)