You read it right.
This post is about my dearest daughter Iona Tasnim. Her struggles at a very young age battling for her life. It took a year for me to write and share this in public. Actually. I had this intention right after Iona discharged but I postponed.
But before I describe further, I hope this very entry will not be misunderstood. I write this not because I am being pathetic or I can not move on or I am being an attention-getter. I just hope that this entry will benefit parents out there.
Iona Tasnim was born on 3rd Sept 2014, in PPUM. After few days in the hospital, she was brought back home. Nothing unusual happened. She was just a normal baby. After 2 months of confinement, and my wife commenced working, she was sent to Cik Pah, a babysitter in Pantai Dalam/Kerinchi.
Iona had unresolved fever in the end of December until mid of January. Worrying about this, I saw doctors just to make sure that nothing serious about the fever. Yes, DOCTORS.
I went to quite a number of private clinics as well as government hospitals. At the same time we also tried traditional healing. You name it. We had tried everything. But the temperature did not go down. If it did, it lasted only a few days, then, it rose back.
The temperature ranged from 37-39. Highest was 39! I was really worried and started pondering why it is so hard to cool her temp down. So I decided to go to Emergency Department at PPUM to have a blood test. Dr did do the blood test but the result was negative. Meaning, nothing to be worried about. .
We were so relieved. But Dr said if the condition (flu, fever) prolonged and Iona is not active, we need to bring her immediately to hosp. So we went home. The temp dropped back to normal but after a week it rose back to 39.
Friday, 16th January 2015, me and wife fetched Iona at Cik Pah’s house around 6 p.m.
Iona was weak. She was not responsive. She didn’t response when I called her name. She was just quite and didn’t move a lot. Cik Pah said Iona was behaving such way since morning. In fact, she puked more than three times that day.
That night, without having a second thought, me and wife went to PPUM Emergency and we told the Dr in charge everything but Dr said it is normal for a baby like her (at age of 4 months old) to have fever and flu and vomit. I said it is not normal, she had been irresponsive the whole day. She said, no, it is normal. It is me that worried too much.
She asked me to just wipe Iona with wet clothes so the temp would drop. Unsurprisingly the temp dropped, for awhile. We were asked to go home and advised not to come to emergency for this kind of petty case as they have a lot of emergency cases to deal with. I was really surprised that Iona was treated as non-emergency case.
We went home quite worryingly knowing that Iona is not okay. I remember it was 3.30 a.m when we reached home. I fell asleep while my wife nursing Iona since she didn’t seem want to sleep. 5 a.m. I was woken up by wife. She was terrified as Iona was shaking her right leg incessantly for more than 5 minutes. We thought she was cold. So I googled what symptom could that be. While googling, Iona’s right hand was shivering. And I immediately decided to bring her to hosp. I knew she was not cold. She was fitting! (temperature was just 37 at that time, surprisingly!) [Fitting =seizures, epilepsy]
We reached PPUM around 6 a.m. Dr suspected that she might have been shaken or brutally abused. So CT scan needed to validate. Iona was almost unconscious. Her eyes were half closed. But from the results of CT scan, there was no sign of abuse. So Dr said iona might have been infected. She was immediately sent to PICU. And Iona did not stop fitting that Dr had to give her some AEP drugs. I know in details every drug that they used on my daughter back then, but now I slowly forgot, may be because I myself chose not to remember.
17th Jan 2015, was the first day iona at PICU. As the fitting did not cease Dr decided to sedate her. She was wearing diapers only because the temperature was so high. She was using life support, wired everywhere. I still have the picture but no, I can’t even look at it until now. It breaks my heart into pieces every time I tried to. Every time!
Dr kept giving her antibiotics as they suspected her brain has been severely infected. They knew it from the second CT scan where it was pretty obvious that there were parts of her brain that have stopped receiving blood and oxygen. They called it brain infarction. After 2 days, Iona had no positive response. In order to know the real cause of her disease, Lumbar Puncture (LP) needed to be done. I was quite reluctant to sign on her behalf but I had no choice.
I vividly remember, Dr said, your daughter is dying, we can not just wait. Can you imagine, an active child that been with me for four months was fighting for her life now! Can you imagine how devastated my wife felt upon listening to it? She carried Iona for 9 months, feeding her and now that very baby is lying on bed demanding for life ! You didn’t see the pain that we took behind every smile we drew. You just probably did not.
So LP was done and finally the doctors discovered that Iona’s brain was infected and so were her lung and blood. She was diagnosed with meningitis, sepsis and pneumonia. Again, I was begging to God to save my daughter. I wanted to see her growing. Dr said if there’s no response, we need to do blood transfusion, which is the last resort.
Miracles happened. Iona responded to the antibiotics right before blood transfusion was done. Alhamdulillah.
But she was still sedated as the she may get fitted again if she was awake. Heart rate was very high, 180++ until 3rd to 4th day in PICU. Fever was still unresolved. Dr changed the meds to somewhat higher and now it was more specific since they already knew the pathogen. Spectrococal something, sorry just couldn’t recall.
On day 6, she was transferred to normal ward. She was not really stable but she had not used life support anymore means she could breathe on her own. But fitting, fever, and heart rate were still a problem. She stayed in that ward for I week or so and during the stay she did many tests, like ECG and etc.
Dr kept saying that for this kind of case, severe infection on the brain, (with some brain infarct), the prognosis is expected to be poor that she may have delay in development, learning, speech, hearing, sight and etc. Every time Dr told us that, I would pull my wife close and calmed her down. And we cried until we fell asleep.
After 2 weeks in the hospital, Iona was discharged. She needed to be monitored for 2 years. She had to go through physio (which is still ongoing), eye and hearing check-ups, and etc. It took sometime for Iona to be fully okay even though she was discharged. Her development was like a newborn. She had to learn everything, again.
Alhamdulillah, after a year, she is now happy and healthy. Of course, there are things that we need to do to make sure that she is really recovered but we are very glad that we never give up on her. We are so happy that we survived.
If you ask, how can a baby be infected that severely, I have never had the answer, and so did the Drs. They said, these pathogens are in the air, everyone, not only baby, but everyone is prone to be infected.
Allah chose us to have gone through this and we never regret. It has made us a better and stronger person in so many ways. It has brought us closer to Allah and it, in fact, has deepened our affection towards our very dearly daughter, Iona Tasnim.