I felt my knees softened, my ears buzzed, and I felt dizzy. It was a struggle to keep my composure as my crying wife delivers the sad news. I couldn't imagine how it could have happened. She had a healthy pregnancy and she never missed a scheduled pre-natal check up. Somehow I was able to leave that thought aside and think that if this news was disheartening for me, so too must this be for her, the mother. I held back the tears and cleared my throat. "Everything's going to be fine", giving her assurance that every option will be explored to give my son the chance of growing up normally.
A little less than a month before, we had him checked up because we noticed him coughing. It wasn't excessive coughing, but we had him checked nonetheless because
we noticed him breathing more rapidly than he used to. The first doctor, leaning on what she heard on the stethoscope said it's Pneumonia. We just couldn't believe it. Our baby never lost his appetite (he's breast-fed), he doesn't seem to appear like he's catching his breath after sucking for a while, and he never had a fever. We went to another clinic and the doctor had our baby x-rayed. As the second doctor held the film against the light, she pointed at the little white spots on our baby's lungs, and confirmed the first doctor's findings. The baby had to be confined. So we went to a hospital to have the baby treated.
Two days of hospital treatment and the baby doesn't seem to be making any progress on his Pneumonia. It was alarming and we started to doubt the assigned doctor's
competence in handling a case such as Pneumonia. The doctor has raised the dosage of the antibiotic a couple of notches already and by the third day she suspected something else must be wrong. She raised the possibility that our baby could have a heart defect. We were quick to slam that thought. "Look at our baby", we said. "At five months he's bigger and longer than other babies his age. He never turned blue on his lips and nails. He always has a strong appetite. He had monthly check ups on not just one but two different clinics and none of his pediatricians ever detected anything like that. He passed on his new-born-screening, and was discharged a day after birth because he was deemed healthy". Another x-ray was performed, and this time the heart was found to be bigger than normal. Heart murmur was also detectable at this time. Part of me was questioning and denying the results. They just don't add up on what we see on our baby prior to all this. But a bigger part of me wanted to know because I don't want to take any chances when it comes to my son. We somehow prepared ourselves for something worse when his blood oxygen was dropping to 85 and sometimes as low as 78, as indicated on the pulse oxy-meter. Baby was required to wear the oxygen mask all the time to ensure he gets as much oxygen as needed. Though we thought it was only due to the fact that his lungs weren’t clear, we still decided on the fourth day to have the baby transferred to a bigger hospital that has a resident pedia-cardiologist.
The baby was admitted based on the previous hospital's recommendations. Heart defect was still a suspicion. We prayed and kept our fingers crossed that the previous hospital's suspicions were all but a mere product of incompetence. Baby was a fighter. Even on the previous hospital, he made a name for himself for having to be restrained by two nurses while another one pierces his vein for the dextrose. It was always difficult to restrain him even on occasions when blood samples had to be taken. Noticeably, they always find it difficult to locate and target a vein. When they do, it almost always raptures. Baby almost always get a lot of needle stabs
on all four limbs before they find one cooperative vein. It's almost as if the nurses and doctors were there to hurt him, and I wanted to jump in and hurt them all back. I just managed to stay rational throughout my baby's needle ordeals. Seeing him protest violently somehow gave us hope, an assurance that he's strong and he'll be alright. But he wasn't always like that. Back at home, he was an angel. He doesn't throw fits and go on a crying spree when he wanted to feed, or when he soiled his diaper. Yes, he cries, but not in a manner I've seen some babies do. It's almost like he's just meaning to call our attention. His sweet mode is the best. He always caresses the face of the one who carries him. He gives the most meaningful stare, and gives the sweetest smile when we stare back at him. He loves to hold on to my thumb and pinky and I make him simulate like he's beating the drums.
2D-echo results confirmed our worst fear. It was earth-shattering, at least for us. He has a Congenital Heart Defect - Patent Ductus Arteriosus (if I'm not mistaken). From what I managed to comprehend, a heart artery that was supposed to close as soon as he was born did not fully-close. Some blood that was supposed to supply oxygen to his whole body literally circulates immediately back to the chamber that supplies blood to the lungs where they become oxygen-rich. "Everything's going to be fine. Baby didn't display any symptom before this that caused us to worry. Maybe it's not so bad." We talked about how our approach on this problem will be, and they coincide with that of the doctors. The Pneumonia will have to be cleared first. Then baby will have to be taken to the country's heart center where he will be thoroughly evaluated by specialists.
On the second night on the new hospital, baby had an issue. After about an hour of yet another bout with the needles, baby turned blue while sleeping. My wife and sister-in-law were with our baby all the time and noticed our baby slipping. Frantically my wife called for help and a night nurse proceeded to conduct CPR. Our baby was revived and was transferred to the Pediatric Intensive Care Unit where he was closely-monitored by a team of doctors. Medicines for his heart were religiously administered - oral drops to calm his heart down, diuretics to decongest the heart and his antibiotics. By his third day in the ICU, he was better. Another night in the ICU and he was transferred to a regular room awaiting his discharge so that we can take him to the heart center. We wondered if baby’s getting stressed with all the painful procedures being conducted on him. He had a heart problem; he’s not supposed to be bothered like that. He had to be calm at all times, but how can one be in a hospital? But then, it was all necessary.
The pediatrician in charge with looking after his lungs doubted if it was Pneumonia at all. He insinuated that it could just be the excess blood brought about by his PDA. It doesn’t matter. We were glad the first battle is over, and that we can get on with the next fight. We got him home and decided to rest for a day before proceeding to the heart center. I guess everybody needed a day’s rest.
With a referral from his pedia-cardiologist, we took him to the heart center very early in the morning to be able to make it to the day’s list of pedia-OPD patients. Baby was documented and was issued a social service card which can be used on emergency cases. There was no evaluation conducted that day, but was advised to return on a date, about 1 ½ months from that day. I was a bit worried due to the length of time for his schedule. Maybe baby wasn’t recommended as urgent, maybe it was SOP on new patients due to the number of OPD patients being attended by the heart center. Maybe it was a good thing that he can rest for a while, shake-off the trauma from the hospital, or so we thought.
We bought him his own pulse oxy-meter and a 20-lbs. oxygen tank, for emergency
cases. My wife and sister-in-law strictly followed his medicine schedules on a chart
issued by the hospital. Even the soiled diapers were monitored for stool and urine
consistency. My wife was also in regular communication with the pedia-cardiologist.
Five days of being at home and we noticed day by day that our baby is visibly losing weight. His stool is very watery, quite mucous in consistency. It’s been like that since his discharge from the hospital’s ICU. Day by day we also noticed that his soiled diapers weren’t as heavy as they used to. He wasn’t urinating much. We were told baby has a medicine that removes fluids on his chest, and it comes out with his stool, not with his urine. From the looks of it, it seems to be draining body fluids as well, and sucks the energy out of him. By the sixth day, we noticed our baby’s eyes lost its usual glow or spark. He looked exhausted and sleepy even when he got enough sleep, and is almost always agitated and irritable. I’d take him and lay him in my arms as I’ve always done, hum his favorite lullaby and he’ll calm down. He always give a loving stare and hold my hand back as if to say he’s fine, he’s secured.
On the seventh day, we grew too concerned and decided to have him checked yet again, to the same pedia-cardiologist. What was supposed to be just a check-up turned out to be yet another hospital admission. The pedia-cardiologist wanted the baby treated for near-dehydration due to Gastroenteritis. How can it be Gastroenteritis? We were told this is normal.
At 4:00 in the morning the following day, we had a frantic call from my wife. Baby had yet another episode, the same as that of the first, but this time he just wasn’t the same. We rushed to the hospital’s ICU, me, his two sisters and his grandparents. We were advised by the doctor to be there for him. What could this mean? As much as I wanted to, I just cannot deny the reality that this is happening. It was a struggle to maintain my composure, so as not to escalate my companions’ worries. It was very heart-breaking when I got into the ICU. My wife was crying hysterically. I was told by her sister she nearly suffered a stroke. It was like a stab on my chest when I
saw him. He was very weak, his left eye crossed towards his right eye. Both of his arms were spread out as both had needles. He had fever chills. I cried, like I have never cried before. I could just imagine the pains and sufferings my baby was going through. I have wished and prayed so many times that God transfer his afflictions to me. I prayed so many times that if a life had to be taken, take mine instead, and let the baby grow up with his mother and sisters. Let him enjoy food, let him learn to walk and run. Let him celebrate birthdays and Christmases. Let my wife show him what’s beautiful in this world, and let him learn to share the simple joys my wife and his older sisters will teach him. My baby does not deserve any suffering. My wife does not deserve this much heartache. My daughters do not deserve to feel the pain of losing a loved one in their young lives.
I held his hands. They don’t hold back as strong as they used to. I caressed his cheeks, his head, his thighs and feet. I kissed his hands and feet like I always do. And we talked to him about him being a natural-born-fighter. In the middle of the pep talk, his heart slowed down again. His breathing slowed. He was slipping yet again. We were crying. “No, no, no…we’re not yet ready. Do not go…”. He was revived and had to be put on a respirator. Despite having the tube on, he was visibly breathing on his own, struggling and twitching to gasp for air all on his own. I couldn’t help but admire the resilience, and pity the struggle at the same time. It was like everything was in contradiction – the admiration and the pity, the resilience of the weak and the hopelessness of the strong, the young in his twilight and the old ones whose tomorrow is uncertain. The emotions were just too much to bear.
An hour passed and another near-heart-failure, and then the twitching and gasping
stopped. Baby slipped into a coma. I guess he used up almost all of his energy trying to stay alive. This time, only the machine kept him breathing. But we could see baby’s left eye straightened. He had this habit of sleeping with his eyelids half-closed. We noticed his body came to its usual plump. Maybe it was the fluids on a bottle that goes into his veins. But still, since his admission, he has not urinated yet. We asked why all this is happening to our baby. We were told having a certain level of fluids in his body gets his heart congested. Having less is also not good for him. It was very difficult to maintain a certain level of body fluid. We were also told his blood had somewhat turned acidic. And it possibly damaged our baby boy’s kidneys, though the result hasn’t yet confirmed it. We never ran out of tears that morning.
Since the day he was born, we'd spend a lot of hours just looking at him. Sometimes it’s just me, sometimes with my wife, and sometimes together with his two older sisters. We’d talk about how handsome he is, how tall he would be, how he’ll grow up to be such a fine man. The sisters don’t like boys much, but they never hold back in admiring their brother’s looks. After ten years of waiting, he came, and had been the center of our lives since then. He completed me, and he brought joy to my wife far more than I can describe. Our worlds revolved around him. We spent the rest of the morning just staring at him, praying for his life, asking God to heal him and let him come home with us. I hummed him his favorite song (which happened to be “Somewhere In Time”), and very slowly he turned his eyes towards us. It was a sight to behold and an eye-sore at the same time. He’s awake, but he was struggling to move even just his eyes. It was the slowest, most painstaking eyemovement I have ever seen. Tears were welling on the sides of his eyes and we wiped them off. We talked to him, told him how much we love him, and that we will keep the fight, whatever it takes, however it takes.
Then two medical personnel came in to take in blood samples. When the other held his right foot, baby boy pulled it back. The other held the other foot, and baby pulled it back also. It was very encouraging for us. His mom was filled with pride and told the meds “You know what, if he’s not sick and if he’s at same age as yours, he’d definitely kick your ass”. “I’m pretty much sure he will, ma’am”, they said. They gave the respect due to our baby, and got the blood instead on his hands’ fingertips.
Our baby hasn’t urinated still. All those fluids coming in to his body and not a fraction have come out yet. Every now and then the nurse checked if he’s urinated. There was so much to worry about: the heart, the lungs, the kidneys; we didn’t know which one to focus on.
We whiled away thinking baby boy got too much love. He’s got a hole on his heart where love leaks and still got so much for us. He’s still as sweet and loving as any parent can wish their child to be. And then we realized the pain and the sufferings. The hardest part was the realization that our baby boy had been fighting on, probably because we were not ready to let him go. He was enduring it all for us – the multiple heart failures, the difficulty in breathing, the inconvenience of having a full wee-bag due to probably having failed kidneys and the aches and pains that comes with it, the pricks and pierces, the fever chills and God knows what else. He loves us so much he won’t go without permission. We cried so hard. We realized we were being selfish. We took his hands. We asked for apologies. We loved him so much that we thought we were helping him. We loved him so much that it hurts him more instead. We kissed him, and told him that this is his call now. Whatever he decides, we will never hold it against him. He’s proven enough, and I’ve seen enough. At five months old, he’s more a man than most men. Heck, he was even braver than I had been since his ordeals started. I only asked one thing if he should go. I asked him not to give me and her mom a manner of passing that will make us cry for the rest of our lives. Tears welled on the sides of his eyes again, as if he understood what we were saying. We took it as his acknowledgement for granting him leave. We had a soldier. And then he soiled his diaper. The nurse got ready to clean him, and I told her no, only his mom gets to clean him up. At that point, my baby gave us a face that signifies he was about to cry. And then there was peace and calmness on his face, like he fell asleep. We looked at the monitor. The numbers signifying his heart rate were counting down to zero fast. The doctors rushed in. I guess the monitoring equipment has some kind of alarm hooked up to their stations. I pulled my wife away to give them room. We both cried. I held her tight against my chest, but I kept close watch at our baby. I’ve seen his face so many times in the past, I’ve spent so many hours just looking at him while he sleeps, I know him very well. There was no doubt that was his sleeping face. After several tries, the doctors were desperate. They were beating his chest and pumping the ambu-bag like crazy. I was about to step in when my wife tried to hold me back. It’s natural, she’s the mother. I told her our son is finally at peace, he’s not suffering anymore. He’s sleeping. Finally she understood, and I asked the doctors if we can kiss and hug our baby for the last time. They gave space and we bid him goodbye.
We’re trying to move on now, no matter how difficult and painful. We take it step-by-step, despite each step being a struggle. We’re pretty sure our baby boy wouldn’t want us to dwell on our heartaches. The resilience, the strength and the courage shown to us by our baby should be enough inspiration for us to keep moving on with our lives.
We hope our baby boy’s story can inspire anybody who read it. We love you so much Marcus Dylan C. Nola. You were an angel sent to us for a reason. You touched so many lives. You rebuilt and reconnected broken bridges. You strengthened relationships. You sealed bonds. We will try to emulate the short but very meaningful life you lived. And we will maintain and nourish what you have rebuilt and repaired in our lives.
This is not a story about losing hope. There are diseases that doesn't have much symptoms, even doctors do not detect them at first, until they manifest at a grave state. We hope our experience helps in raising awareness.
