…Get up, come on get down with the sickness…
Well, that’s how the song goes but I am not writing about Disturb’s Down with the Sickness song. Trust me, if you don’t know that song, you’d rather not know about it. Especially if you have, say, a more sensitive side, for the lack of better term.
Anyway, this is a long overdue post, really, so it may be a tad bit longer than usual. I already had this title for a while now because of the song. I like the heavy beat of the song, bottom line. But like I said, that is not what this post is all about.
Before we got discharged from the hospital after I gave birth, the pediatrician checked on the little boy. Out of curiosity, the doctor asked if my son’s father has Chinese blood and if I have a photo of him. I remember telling him that I don’t think he has Chinese blood nor do he has Chinese-like eyes. And no, I don’t have a photo of him. And if I have one, I don’t think I will show it to anyone for that matter. Not that I said the last line out loud.
Then he mentioned the dreaded words, which never really registered to me that time. He said that my little boy appears to have symptoms of Down Syndrome. The comment never really sank in to me and I said that my little boy got his father’s eyes. Then I buried his observation in the deep recesses of my mind.
Day 4 of little Z’s life, he had a fever. His temperature went up to 37.8, if I remember correctly. I brought him to the emergency room that same night. It was definitely a night of horror. I wanted to punch a few doctors for making my son cry. They pricked him so many times and without care. He was literally running out of breath. The diagnosis was jaundice. He also had signs of pneumonia. He was put on phototherapy, given two types of antibiotics at different intervals, and consumed 4 bags (I think) of dextrose to keep him hydrated.
The pediatrician brought up Down Syndrome symptoms again. This also brought about the fact that my son was born with bilateral congenital cataract. That was the time that I made some research about it.
I’ve seen a few articles related to Down Syndrome when I was still pregnant. I totally ignored those that time thinking that my baby will not have it. So during little Z’s first confinement, I read all there is that I can find about Down syndrome. I was wracking my brains trying to absorb all of the information. At the same time, I was trying to deny the fact that my son has it.
I checked his eye and ear alignment. It looks fine to me. I checked his palms. He has normal palm creases, the gap between his toes appear normal, his fingers are not short and he did not have a cleft pallet. Except for the shape of his eyes, his cataract, jaundice and pneumonia, he appears to be a normal baby to me. But these are all symptoms of Down syndrome.
My little boy started losing weight and was confined again at three weeks old. He was breastfed and was literally feeding every hour and a half or less. I had more than enough milk supply for him and yet, it was a puzzle why he was losing weight. He lost so much weight that he became too weak to even suck from a bottle. Doctors extracted blood samples again. Another IV line was hooked, two types of antibiotics were given. He was so weak he was put on tube feeding to conserve what was left of his energy. I almost totally lost it that time (you can read about that here).
Two pediatricians were already looking after him during this time. It even came to a point that an oncologist reviewed Z’s blood test results. The results showed no signs of cancer so I was able to breathe a sigh of relief. However, the doctors required additional blood tests. And then again, the second pediatrician advised to have my son tested for Down syndrome. It was then that I first heard of the term Chromosomal Analysis.
Chromosomal analysis was not available back home. I don’t think there even is a geneticist there. So we got a referral to National Institute of Health. Since I had already decided to bring my baby to the big metro with me to consult with further doctors and specialists, I called my friend who is a doctor in PGH and asked for assistance. She was very helpful during those times when I had to bring my little boy within their area for lab tests.
From October 2013, I kind of chickened out of having my son go through chromosomal analysis. It was just a simple blood extraction really but I was more wary of the results. I was scared of the unknown. So I decided to push it out and prioritize my son’s other lab tests required by other doctors and also to have his lens extraction surgery scheduled.
Mid-December, a week prior to little Z’s surgery, I decided to have his blood sample extracted for the analysis. I wanted to get it over and done with. The results will be released in 2-4 weeks. That time frame will be enough for me to cope with the little boy’s surgery. We will just tackle on the next one if the result turned out positive.
Surgery became successful. Christmas and New Year came and went. First week of January was little Z’s first eye doctor appointment of the year. At this time, the results of the chromosomal analysis was already available. But I made excuses not to get it. The week after, when my son was safely back home and I was alone here in the big metro, I took a leave from work and went to NIH to get the results.
I never wanted to look at the results right there and then. I was planning to just pick it up, fold it, come back home and read the results. But then the staff at the clinic placed a logbook just beside the results and asked me to sign. That’s where I saw it. Out of all the things on that single page result, my eyes zoomed in on what really mattered most.
For several months after little Z was born, I was praying so hard that he will be negative of Down syndrome. I was hoping for a miracle that his eyes will clear from cataracts. I was hoping that everything was just a fluke of nature. The three strands of chromosome 21 stood out from the page and like daggers, it stabbed my heart. It was hard to breathe, I had to work hard to keep my composure while I thanked the lab staff as I handed her back the logbook. I had to keep a poker face as I walked along the hallway, keeping my pace when I really wanted to run.
The short distance from the lab to the main door of the building was short. But that time, it felt like miles long. The walls were closing in on me, my throat clogged to the point that I couldn’t really speak. It was a good thing no one was with me else I would have broke down right there and then. I took a cab from there and tried to distract myself by visiting my bestfriend in the hospital who just gave birth. There was no discussion about the results.
I didn’t want to go home so I dropped by the mall after the hospital. I bought my son another toy, a few supplies, then got myself a liter of beer. All I wanted was to get drunk and drown myself in misery. Until this day, I still remember what I’ve felt when I saw the results. I never wanted to cry but I really had no choice. I was hurt, I was in total pain, I felt betrayed, I lost all hope and faith. It felt like being sucker-punched several times more after you’ve yelled “uncle!”. It was more agonizing than getting heartbroken by a guy. I could almost feel my heart ripping to pieces but without any blood spilling. It left like I was dying.
I mourned the loss of the ideal future that I had in mind for me and my son. I had to start from scratch and had to come up with different plans. It was difficult. I struggled. Until now, I struggle. Sometimes when I see babies around Z’s age do things like standing with assistance, sitting unassisted, crawling on their own and all that, it pinches my heart. Because my little Z will never be like them. He’s got a different path in terms of achieving his milestones. I know that he will get there, too, but sometimes I can’t help but envy the others. While others go to malls and meet with friends and show off their little kids, our idea of bonding moment for Z’s first few months were doctor’s offices.
So, there you go. That’s the story of my little Z. Yes, he has Down Syndrome. No, I haven’t consulted with a geneticist yet. But I am already trying to have him scheduled for an appointment with a developmental pediatrician to assess his development. I am trying to get a way from too many doctors for now so I am not really in a hurry to do that. I just want to enjoy the time I spend with my little boy without thinking of doctor’s appointments and the likes for the meantime. For now.