After the Silver Pearl "Jumaana" (our first baby) left us, I absolutely had no thoughts about another baby for a while. I was thinking about going ahead with another baby after a year or so & even thought about adopting a child. But my wife was very sure that we need another baby at the earliest that can give us some peace of mind, though it can't give back what we lost already. Soon she got conceived, by the great Almighty's grace. We were not worried if it is a Boy or a Girl, but always thought that another baby girl could give us more happiness than a baby boy. It was the inspiration that Jumaana had left us with.
Once in 2-weeks or a month, we had regular checkups, blood test, scans & whatever is needed to make sure the baby is healthy. My wife who used to be a lover of Ice Creams & Chocolates, stayed away from all that from the moment Jumaana left us. She used to avoid even a drop of cold water & was extremely very careful so as to make sure the baby is healthy enough. Every time we went for a medical checkup, we came back with smile as everything was going very positive. During the 7th month scan we were thrilled seeing the baby laughing very cute inside her mother's belly & after a long time we started smiling back. It was a sign of getting back to real life. We were ready with the names for both girl & boy, so when the newcomer is here, we could name right away.
On Aug-22, 2009 (Ramadan 1, 1430), my wife underwent Cesarean & the joyful news came in few minutes, when the doctor announced - "You got a very healthy baby girl". I thanked God, because it really made me feel as if I have got Jumaana back with us. After few minutes the baby dressed in a pink costume was handed over to us. A teddy bear or a bunch of flowers or a cup of strawberries or whatever you call, she is all that & more than all that. Such cute & beautiful little baby she was, with a different appearance than Jumaana. Jumaana used to be a Xerox copy of me from her birth to the last minute, where as this baby was looking so different.
As decided earlier she was named "Rabiya Ibrahima". Rabiya means Princess & another meaning says Breeze, what so ever it is, she was definitely Miss. Precious for us.
Jumaana's arrival was a stunner as she came like a storm, where as Rabiya was full of peace & silence. After the first cry & after she was brought to mother's ward she was closing her eyes very tight as if to avoid the light falling in her face. After Jumaana's loss we were very curious to see how active Rabiya is. Thank God, she was very active right away moving her hands & legs here & there giving us the real satisfaction needed. Despite having faced the 2nd cesarean in under 2-years, my wife too in half-sleep saw the baby & asked everyone around her, if the baby is moving her hands & legs freely. Such was the fear we everyone had after Jumaana's loss. Almost after some 2-hours Miss. Precious opened her tiny eyes lightly & from then started doing all the naughty things a little baby could do. It was a wonderful feeling to have got a baby back & being a Girl baby made us feel much better.
We came home in few days with the baby & the Princess occupied the room where her sister Jumaana lived those little precious months. She was so active that whenever she makes herself wet she would rotate to almost 180degrees & start crying like anything until we change her dress. Sometimes she would move close to the edge of the bed that we would fear she will fall down. Such was the activeness that gave us all the joy we were dreaming for.
She won’t sleep without a fan even for a minute & she will wake up suddenly if any noisy disturbances were around her. And when she is really sleepy she would close her eyes with both of her hands or pull a cloth over her face to show as if she is feeling so sleepy. At those times even if my wife makes a bit of sound, I will give a stare that she will move away right away. Every few minutes I would check if she is sleeping better or if she has made herself wet or so. If she cries in all of a sudden, I would ask my wife to stop whatever work she does & check the baby right away. My wife will be saying - "Oh you fear for everything, your daughter has just got up after some deep sleep & might feel hungry & you are getting mad at me before I pick her up". Though she says so she will be more caring than me towards the baby & she will rarely move away from her.
And it was almost after the 3rd week; I noticed that Rabiya is not as active as she would be before a week & despite having inner fear I felt it could be just some tiredness or any weakness due to some kind of vitamin deficiency or something else. I noted the same very next day & really started worrying, but did not expose it to anyone including my wife. But by that evening my wife has noted the same & she called me with a very worried voice why the baby is not as active as she was during her birth & few days ago. I consoled her saying it could be some general weakness, but the inner fear started growing more & more. And believe me; the Rabiya who was looking so different during her birth has started looking like an exact photo copy of her sister Jumaana in those days. With less activeness & that sudden change in her face appearance made us think as if we are living with Jumaana again.
With worries & confusion, to make things clear, we took her to the doctor right away & we were suggested a consultation with a famous Neurologist. After checking the baby for more than 10-minutes & after knowing all the symptoms that our first baby Jumaana had, the doctor gave us a glimpse of the shock which we were about to face later, saying Rabiya too might have 50% chance to have SMA (Spinal Muscular Atrophy - The No.1 Genetic Killer of Babies & Infants that took Jumaana from us in Nov-2008). My wife could not control herself while I just walked out in disbelief on what is happening around.
After discussing with some friends & family members I decided to cross check with another Neurologist who is said to be the number one neurologist in our city. He too examined the baby for few minutes & then took his notepad & wrote "SMA Type-1" , explaining what is SMA & so on, without knowing that we already knew about SMA. The moment he wrote "SMA", my wife started crying much & I forced her to go outside & then continued my discussion with the doctor who said he was 99% sure that this is SMA. I had some points to argue as the baby was very healthy initially & the doctor requested me to go ahead with a SMA Genetic Test for Rabiya which will confirm the truth.
SMA Genetic Testing facility is available only in Hyderabad & we were requested to send the blood samples of Rabiya to the Hyderabad CCMB (Centre for Cellular & Molecular Biology - Council of Scientific & Industrial Research). Rabiya struggled a lot as the nursing staff could not find the vein to collect the blood from the baby. After various tries finally they took the blood needed for the test & we were helpless seeing Rabiya having 2 or 3 patches in her tiny hands & legs. The blood sample was sent to Hyderabad & we were requested to wait for 2-weeks for the report.
We requested prayers from friends & family members all over the world & our hopes were high that the test will go negative. But the shock came finally as a report clearly stating that Rabiya has SMA Type-1. I did not know how to console my wife & what to answer to people around who are hitting with various questions & people who are suggesting various doctors to check again.
But I was so strong & clear that I don’t have to do the same mistake that we did with Jumaana taking her to various doctors with a hope that we could save her. In fact we did all that without knowing that she had SMA & without even knowing what is SMA. But having a very clear idea & after having a consultation with my family doctor I decided it is better that I stick to the basics & move ahead with the possible treatments & care needed. SMA babies are usually stuck easily by Pneumonia & we made sure that Rabiya & her environment was very clean & also made sure she is not affected by cold. But seeing our baby without any movements started killing us & we wanted to find a solution someway or other so sooner.
Dr.Vasudevan (Irava), one of my close friend who is in to Siddha Research, whom I usually contact for any health based issues came with a supporting hand & he invited Dr.Pushparaj from a place called Marthandam who is an experienced Siddha Doctor. Though he does not visit patients at their place, he came to Chennai based on the request made by Dr.Vasudevan knowing the severity of the condition the baby is going through. After checking the baby for a while he was hopeful that he could do the best that could save the baby's life. Initially he suggested few siddha based medicines & requested me to come & collect some more medicines later after a month.
Rabiya started to get better in few weeks & our hopes raised high. She was taking food properly, her crying tone was good enough, her hand actions was much better & she was able to turn her neck a bit better too. In a month I went to Marthandam to meet Dr.Pushparaj & get additional medicines & everything was going fine. But despite reaching 5th Month, her neck balance was very poor & she was not sleeping well at all. She rarely sleeps for continuous hours & very rarely slept in the nights. I & my wife will be most possibly sleeping around 4 to 5-hours; sometimes even under 4-hours as we want to make sure Rabiya feels better when we are with her.
Later Dr.Vasudevan referred another Siddha Doctor who is also a Siddha College Professor Dr.Padmapatham from Triupunitura, Kerala. We took Rabiya there & the medicines given by him were worth as well, as Rabiya looked much better in next few weeks & started sleeping well than usual. Her neck movements too got much better than it was before & we started believing she is going to be alright so sooner. We started hoping that she has crossed the danger zone & would live safe, may be with some disabilities which she could manage.
We were requested to bring the baby once in every 2-week & we would travel 12 to 14-hours in train to reach the Doctor's place & you could imagine how hard it is to manage a baby who is already sick in such a long travel. All those 14-hours of travel, me & my wife will be just seated without sleeping to give more attention to her. Most of our travel was planned in the day-time to avoid any disturbances that might be caused to other passengers in train if we travel in the night. It became too harder after 3 trips as the baby was very uncomfortable with the travel & we both too became so tired.
So we planned to stay temporarily at Kerala somewhere near Triupunitura for few months to make sure that we can meet the Doctor every week & Rabiya too will have proper rest & treatment as well. One of my uncle Mr.Shajahan, who lives in Muvatupuzha which is near to Triupunitura who already has helped us very much during all our previous trips to Kerala guided us by renting a home in his place itself, which means we are just 16kms away from Triupunitura & we can easily meet the Doctor every Sunday.
We moved to Muvatupuzha on Mar-6th, 2010 & got set to adopt with our new place, new environment, a different language speaking people with a bit of different culture with 100% of hopes that we will go back home with Rabiya very happily. And she too showed all those positive symptoms & so much of improvements in a week. She would bend back & turn her neck to see me when her mom asks "where is your dad?”. She would be so happy when we talk something to her & she could clearly understand our mood easily as she would react very much based on what we talk & how we react. When she feels hungry she will cry like anything & my wife will rush to make sure she gets the feeding she wants right away. Once she got the food she wants she will play as usual or start sleeping right away without any troubles.
And it was Mar-17th, 2010, we were not aware that our Kerala stay & Rabiya's life will end that day. She was as usual very normal, taking feeding properly & was crying for some rest. My wife made sure she took some rest in the Cradle around 2.30pm & the cradle was hanging in the same room in front of us. After finishing the lunch while the baby was sleeping, I started working as usual in my Laptop, while my wife finished her afternoon prayers. Around 3.25pm, I closed my works & was planning to get ready for the evening prayers, which is around 4.10pm. My wife was ironing one of my Shirts. I just went near the Cradle as usual to check Rabiya, if she has made herself wet or if she is feeling any discomfort. The moment I saw the outer portion of the Cradle, my intuition said something is wrong.
I just came close to viewing the baby & saw Rabiya sleeping very casually with one hand up & one hand over her chest, but with no signs of any movement in her body. After Jumaana's experience & after we got Positive SMA Report for Rabiya, I used to check if she breaths or not whenever she is in deep sleep. Sometimes even I would touch to confirm that she is breathing properly. So similarly I touched her hands & then checked her heart beat & could clearly sense the fate. I tried giving her some breath through mouth & nothing worked. I did not cry & did not let any of my emotions. I gave her a kiss in her hands which she used to admire very much & said "Rabiya you too left us & what in earth are we going to do here after?”. Because, she used to react right away, whenever I touch her and sometimes even before I touch the cradle despite being in deep sleep. And, I did realized that my Angel is no more right away as I felt something is wrong, when I saw the Cradle without any movements.
I know I should again play a similar or even a better role than what I did during those last minutes of Jumaana. During those last minutes I had my father in law, mother in law, two of my cousins & a relative as well, who all took care of my wife. Here I am just left with my wife's grandma who is a very old woman. So I know I should be very careful here to make sure everything was peaceful.
I called my wife & said "Fathima, come here, check & feed the baby. See she is in deep sleep & might feel hungry". My wife came saying "you always fear whatever your daughter does, don’t worry, she has not slept well this morning" & took the baby in her hands. An already weak Rabiya's body fell so floppy in her hands & she was shocked & started crying. She tried to splash some water in her face & try whatever she could & I know she is not going to get up anymore. My wife wanted to take her to any emergency care right away. Though I know it’s not going to help, I could not stop her. Also I myself wanted to make sure if there is any chance to save her at the last second. We could not find an Auto or Car & we ran to a hospital which is just about 2mins walking time in the opposite side of our home & I took Rabiya in my shoulders like I carried Jumaana in those last moments, knowing this will be the last time I carry her in my shoulders. With no Pediatrician or any senior doctor available at the hospital, we took her to another Hospital which is 5kms away from that place. Rabiya was rushed in to the Emergency ward & they tried to give her the first aid needed & in few minutes the doctor called me alone & said "I am sorry, Baby Marichi Poyi" (I am sorry, your baby is no more).
I could not clearly understand what the doctor is saying further as he was speaking in Malayalam, but understood a bit that he is saying she could have left at least before 30minutes time. I just requested him to keep the baby inside for few minutes as my Uncle will come with his friend, so I can take the baby back home. My uncle, three of his friends & one of those friend's mom rushed up. That woman took care of my wife by taking her to the other side of the Hospital saying the baby is getting some treatment right now.
I called up my dad & said what has happened & that’s when I broke up finally. He was in big shock as everyone in our home & my wife's home used to talk to us every now & then & know how Rabiya is doing. That day too my mom, my mom in law, my sister in law, my brother & few of my friends have talked to us few hours ago & even few minutes ago asking how she is progressing. I asked my dad if I can finish the last formalities in Kerala itself, as the baby's body can't stay like that for more time. But both my parents & my wife's parents were very sure that they want to see the baby one last time. I promised them that I will bring her back to Chennai & requested that Rabiya should be buried very near to her sister Jumaana.
We requested for an Ambulance with a Freezer facility as our travel would take 12 to 13hours. We were discussing on what else to be done & many people who were in the Hospital who knew the news were asking me & my uncle about what has happened. My wife was running to me in between asking if the baby has come to normal, why they are not allowing us to see her, why many people are looking at us differently, what they are coming & talking to me & so on. I managed to keep her away saying it will take some time as the baby is going though emergency treatment at the moment.
Finally the Ambulance came through the back side of the Hospital & the baby was taken in. Finally we took Fathima to the Ambulance & asked her to get in. Now she realized that Rabiya is no more & started crying like anything. She was upset that I have hidden the truth for more than an hour. I consoled her to stay patient.
The cute tiny little angel Rabiya was sleeping inside the 7 to 8 feet Glass Freezer box. There was more space in her left & right that we both could sleep as well along with her & in fact it could have been fine if that was the case really rather than dying every moment seated next to your little Angel who is not going to smile at you, who is not going to get up any more. She was sleeping as if she is just taking some rest for a while. You could see the exact photo copy of Jumaana in her face, you could sense the last minutes of Jumaana in her.
We reached Chennai the next day Mar 18th, 2010 by 9am & our family members & friends were eagerly waiting to have one last look at the little Angel & the whole street was crowded. My wife wanted to carry the baby in her hand as she knows the Angel will be rushed up to the Funeral place in next few minutes. I requested her to get down along with her grandma. The driver opened the Freezer box & I lifted my little Angel who was still looking like in a deep sleep. I broke up again as a bunch of soft flower bud has completely changed to a Freezed Ice Bar. I brought the baby outside the Ambulance Van & handed it to my wife & the whole street cried & screamed in pain & tears.
In next 30-minutes the last minute formalities were done for the little Angel. Before the baby was going to be prepared for the funeral I went to have a look at her again for one last time & she was still looking that beautiful & I touched her hands, head & legs for one last time & started walking back. Her hands have turned in to a bit of blue in those few minutes. From the moment the SMA report came as positive I have prepared my wife to be ready to face anything that happens. That has strengthened her much for sure & she herself stood & took care of the last minute bath & other formalities done for the Angel.
The last prayers were done for my Rabiya & she was taken to the funeral ground & in next few minutes my happiness was buried deeply. She was buried near to Jumaana. With tears I walked back turning & seeing both the graves again & again. There was enough space between them, which later on I & my wife could accommodate as well. Both of my little Angels Jumaana & Rabiya were resting in peace together, while I walked again with no one to address me as a dad anymore.
I think back the day when we got her SMA Report as Positive. That day I walked to Jumaana's graveyard & thought to myself that Rabiya will also come here sooner. You call it an intuition or what so ever, that was the feeling I had & from that day I was very much prepared to face the fate. But once Rabiya was recovering well & responding to all those medicines, I forgot all that & started believing that she is going to live safe from there on & when those hopes were getting high, she left us with a shock without even showing any such symptom that she is counting her last few days.
When I got confirmed she has SMA Type-1 & knowing the hard factors of SMA, I used to pray God that either she should live safe even may be with some disabilities that she can bear with or if it is not possible anymore, better take her to the Paradise without any pain, without any struggle & while sleeping itself. Because our first baby Jumaana lived with struggles most of the time in her short stay in this world & she left her life in our hands with so much of pain that we don’t want to see again happening to any parents in the world.
And the Almighty has answered to my prayers. He took my little Angel without any pain, from normal sleep to the deepest sleep. She was very impressive in her last few days, showering so much of love towards us, particularly towards me as Jumaana did throughout her entire short life. She used to watch me continuously for few minutes despite being in her mom's lap who was trying to talk to her something every time. When I see back, she will utter that Angelic smile & continue looking at me with an eager & love in her eyes. When I go near her she will get excited very much & try to talk something & her excitement will be doubled when I kiss on her hands. I used to say to myself - "Rabiya, please don’t see me like that & don’t show too much love on me, your sister Jumaana used to see me like this & show so much of love on this dad & she left us. Now you also look at me such powerfully with an Angelic Smile & show much love on me than on your mom. I fear for it". Such was her last days that she almost made me think of Jumaana more with all her activities & appearance that could almost make me speechless for few minutes.
Now I am speechless as well with another Angel leaving us very much alone in this world. Who on earth doesn’t dream for a cup of tea from his daughter on a tired evening, who on earth wouldn’t dream buying dress or jewels & surprise his daughter during a holiday shopping, who on earth wouldn’t tease his wife saying my daughter's cooking is the best than yours & who on earth wouldn’t expect a hug from his daughter after a stay away journey. I will miss all that in my life & walk through only dreaming for all these.
I used to show so much of love towards kids & my brother's kids would come to my room & play with me for a while to give some happiness & when they run away hearing their mom or dad calling them, that’s when you know the real pain that, you don’t have anyone to run towards you, hug you in the sleep, pour down the water in your bed or wake you up in the mid-night in fear. In this busy life many of us get irritated when our kids does all those cute naughty stuff. But remember, there are people like us who dream & die for that.
People around us including friends & family members come up with various suggestions & questions. We are not able to answer them or decide anything as of now. While most of them consoles us, some comes with the questions of "what if", "why if" & "how if". It is the affection & care they are trying to show on us during this hard period of our life & we hear that all patiently. You climb a ladder & fell once & you think about climbing back again. Some might stay away in fear, some might try later, and some might try right away with confidence. When, the one who tries with confidence climbs successfully you cheer them & if he fails again you say "Ah, why did you take such a risk when you have already fell down". Whether you break your hip or not it breaks your heart, because people rarely appreciate you when you fail despite how hard you tried. When everything goes positive you don’t have to worry, but when you are down with a negative you need to bog down your head & that’s what we do right now.
We live in darkness with patience & peace, with no idea of what we are going to do further. Only the Almighty knows what is set to happen & what more is yet to happen. He is the Creator & he gave us these Precious Angels & he took them back, because he loved them more than what we did. Thanks to the Almighty, we have started living patiently bearing all these, with 100% of assured hope that we will live with them in the Paradise.
- "Jumaana" Syed Ali