Acceptance

 

A long post alert…. A short story about how a family copes with the birth of a pre term baby and their child being diagnosed with Cerebral Palsy. And how they come to terms with reality and accept their son with love and pledge to give him a  happy, nurturing environment.

 

 
 

Acceptance

The entire Sharma family was tensed as they stood near the entrance of the labour room in the wee hours of a Tuesday morning. Especially Ramakanth, Suma’s husband, was getting restless, hearing her scream. This pregnancy was a precious one as Suma had conceived after ten long years of marriage. They had longed for a child of their own and were getting weary of repeated medical tests. Both their parents were equally understanding and supportive through their trials and tribulations. The Sharma’s were over the moon when Suma announced her conception. Everyone had been very protective of her and pampered her.

The Doctor had advised Suma to complete bed rest. The first seven months had been uneventful and smooth with regular checkups, the usual baby shower functions, the pampering, and the prayers. But, even though they were careful as it was a high-risk pregnancy, this pre-term onset of labour had jolted them.

Now, waiting eagerly in the serene environment of the well-kept nursing home was one hell of a task. It was 5.15 AM and still dark, but the nursing home was fully awake, buzzing with activity and bright lights. They had rushed to the hospital when Suma had complained of pain.

“It’s almost two hours, Mayi. What’s happening? She is screaming away…I don’t…….” Ramakanth was anxious.

“Pray and wait,” Mayi, Ramakanth’s mother brought her hands together, pointing them upwards, and started mumbling shlokas.

“I will ask again,” Lakshmikanth, Ramakanth’s elder brother, went to enquire.

“What happened? You called Suma’s parents, right?” enquired Appa Ramakanth’s father.

“Yes, yes, Appa. They are on their way,” Ramakanth said. Suma’s Parents had started from Mysore and would be in Bangalore any time.

The morning sun was rising, casting a reddish hue and filling the waiting room with tender morning warmth. Suddenly, Suma’s screams had stopped. But there was no sign of any doctor or nurse updating them about the situation.

Ramakanth was getting restless by the minute. This wait was getting onto him. He was optimistic as he had a very skilled doctor attending to Suma, but at the same time, his negative thoughts troubled him. Thinking about all the possible complications in pre-term labour, explained by the Doctor, made him nervous. As he was contemplating, the senior Doctor strode out to announce the birth of a baby boy. The whole room was filled with joy and happiness, with everyone congratulating each other. Everybody let out a sigh of relief as the dreadful night had just ended.

This happiness was very short-lived as the Doctor announced that the baby had developed complications of various kinds, like breathing difficulty, heart rate abnormalities, and mild jaundice; And had to be immediately shifted to the newly inaugurated Neonatal ICU. But the Doctor also assured that the best team was with the baby and stressed the availability of advanced medical help.

Suma’s parents also joined this partial celebration tension-filled atmosphere. The elders consoled each other as well as Ramakanth and assured of God’s blessings. Everything was so different and new to them. There were very few hospitals that had Neonatal care facilities. Laxmikanth got busy calling home to inform his wife and others.

While this was the scene in the waiting room. Ramakanth went in first with Mayi to meet Suma. Suma was all exhausted, worried and wanted to see the baby first. Ramakanth explained everything and said she could see the baby as soon as the Doctor allowed her to walk and go to the NICU.

“Did you see our baby?” Suma asked in a feeble voice.

“No. They are not allowing anybody. But doctors are hopeful and positive as the baby weighs 1.25 kg….. Which is worrisome….. But they have handled babies as small as 500gms, and many babies have done well” Ramakanth tried to sound at ease.

In the evening, Dr. Rajeev, the Chief Neonatologist, briefed Ramakanth and Suma’s family together in the private room, where Suma was shifted. He was very hopeful as the baby was taken off the ventilator and incubated with oxygen saturation. He mentioned that the baby was handling the external oxygen well and breathing independently and warned about any complications and risks involved. On this note, everyone dispersed, leaving Suma and Ramakanth in the room. Suma’s mom was to join Suma for the night and went home to get dinner for Suma. When they were alone in the room, Suma started crying profusely.

“I don’t know why this is happening to us? Why is our baby not with us…… but has to struggle in a box…..so far away?” she went on murmuring and crying.

“Please, Suma, we need to be strong now,”

“No…. why my baby? What have we done?”

“See, let us face each day as it comes. Our baby has already come out of ventilation. He will also be out of the incubator very soon. So, let us not lose hope.” Ramakanth was trying to sound confident and full of hope. But deep inside, only he knew what he was feeling. At least Suma was able to vent her emotional angst. Ramakanth knew he needs to be holding on and make the environment positive.

“But … If that’s the case, then why did the doctor talk about complications and risks?” Suma reasoned.

“Now, don’t think too much now. Take some rest…have your dinner when Mummy comes back. When I’m back tomorrow, we will both go to see our baby for the first time. So let’s look forward to this happy moment of being together, please.”

The prospects of seeing and holding the baby kind of uplifted Suma’s spirits, and she was able to shift her focus on thinking positively about their son’s future. However, all through the day, she was battered by negative thoughts and fears.

The next day, both Suma and Ramakanth were allowed to see their baby in NICU. Both entered the brightly lit NICU after the prescriptive scrubs and wearing of the apron. They were kind of stunned by the sanitized, factory-like atmosphere. The walls of the hall had wavy, flowery motifs painted in blue and yellow pastels. Various types of medical equipment placed in a systematic periodic order were quietly doing their job, flashing all kinds of medical information on their monitors. Occasionally, sounding a beep to indicate, alert and alarm the super-efficient, dedicated staff of two doctors and ten nurses.

This ‘first time parent’ couple was finding the whole experience nerve-wracking. They tried to ease each other as they moved towards the incubator under the direction of a sister. As they came closer to the incubator labeled ‘Baby of Suma’ and stood near it, both tightly clasped hands tightly and held on to each other.

The first reaction of both Ramakanth and Suma was that of disbelief and shock. They were unable to think of this small puny bundle of flesh wrapped in soft cotton, flapping his tiny limbs in small awkward jerks with his eyes barely open, as their son. The baby was strapped with numerous tubes and monitoring equipment. They couldn’t bear to see their little darling struggling for every breath. The dreams they had shared of cuddling a chubby baby were shattered as they stood benumbed. They both were equally scared and had very little idea of what is expected from them. What were they supposed to do? Lift the baby… kiss…. hug or do what?

As they stood there, Suma was crying continuously. Finally, Ramakanth gained composure and tried to control the whole situation, becoming an emotional melodrama.

“Can we hold our baby, Doctor?” asked Ramakanth to a young intern.

“No, not for another 2-3 days…. I’m afraid.” smiled the Doctor. “But you can touch him. He would definitely recognize you both.”

“How is he doing?” enquired Ramakanth. After hearing the Doctor’s already known report, both went back to the ‘baby of Suma’ incubator and slowly slid their hands in the box and touched the soft wrinkled, reddish-pink skin. Both were so numb with a storm of emotions that they failed to catch a glimpse of a slight movement towards them the baby had made.

Suma and Ramakanth left the NICU after the head nurse politely asked them to leave. A sense of remorse and fear of the unknown sank into them as they passively strode out of the NICU to face the questions asked by their eager parents. However, Ramakanth gave a lot of hope, told them that the baby was doing well, and quietly signalled Suma to cheer. They explained the scene as enthusiastically as possible to bring a feel-good environment.

Since nothing could be done and one has to accept the reality, the family slowly adjusted to the situation. Ramakanth had to join back work after a week off. Suma used to be at the NICU for almost twelve to fifteen hours. As the days passed, the baby was showing slow but steady improvement. The oxygen support was slowly weaned off, and the feeding tube was removed on the 7th day. On the 12th day, doctors asked Suma to try direct breastfeeding. Till that day, she used to pump the milk, and the baby was fed with the help of pallada.

Suma felt content and blissful as she held the baby and tried to breastfeed him. It was just a trial, but by God’s grace, he sucked well for five minutes and felt tired and fell asleep. Her joy knew no bounds as she finally was able to feed her baby like all other mothers. Slowly, Suma and Ramakanth were able to see beyond the obvious. So was the case with other family members as they became more hopeful and cheerful. Pujas, prayers, and best wishes poured in from every corner.

Some 20 days passed by with the baby showing improvement. The scheduled visits to the nursing home by Suma, Ramakanth, and other family members continued all along.

On the 20th day, when the baby weighed two kg, a brain scan was done per the protocol. Ramakanth was slightly worried when he was asked to see Dr. Rajeev. He said worriedly, “Everything is going on well. Then why is the Doctor asking me to come over? What could be the reason?”

Suma was oblivious to the turmoil in Ramakanth’s mind as she was slowly getting comfortable handling the tiny baby. She enjoyed the joys of motherhood in diaper changing, feeding, and burping and was looking forward to taking him home. In fact, everyone was now asking the Doctor about the discharge.

Suma and Ramakanth waited outside Dr. Rajeev’s OT Clinic. Then, finally, after his usual rounds, Dr.Rajeev came into his office, settled down to take out the scan, looked at them, waited for some time, and said in measured words.

“I am afraid, there is bad news, Mr. Ramakanth.”

“What?” Both husband and wife screamed and almost leaped out of their seats.

“I know, it’s difficult. But, this is reality. One cannot escape it.” Dr. Rajeev waited for some time.

“Please tell us, Doctor, Is everything OK?” demanded Suma.

“The brain scan we did this morning doesn’t look normal. There is quite a lot of damage due to various complications during labour. Plus, the child was born pre-term. So, he is vulnerable to developing developmental problems as he grows.” the Doctor wanted to continue further when Ramakanth interrupted him.

“So, what is the diagnosis, Doctor?” asked Ramakanth impatiently.

Dr. Rajeev cleared his throat and started his explanation “See, it is an umbrella of symptoms collectively called Cerebral Palsy caused due to poor brain development and /or brain damage either during pregnancy or labour.”

“What? Will our baby, be normal” shouted Suma.

“Wait, Suma. Let the Doctor explain. Please, calm down.”

“I know it’s challenging. But the scan shows quite a lot of damage. So it is better to be prepared and work for the improvement of symptoms than regret later.”

Suma was shivering and speechless. Yet, surprisingly she was not crying. Instead, her eyes looked blank, as if she could not comprehend what was being told to her. She was in some kind of trance.

“Please… doctor, please explain.” Ramakanth pleaded to the Doctor holding Suma’s hand.

“See, the child will have some degree of motor developmental disability which will directly affect the child’s mobility as he grows. In addition, he may or may not have other sensory issues, speech and vision problems.” Dr. Rajeev was explaining. “But the prognosis in such case is almost impossible … I have seen so many babies doing well despite being diagnosed with Cerebral Palsy.”

“No. But I fail to understand how can it be ….” Ramakanth was talking to himself …. “He was fine until yesterday.”

“Don’t worry. Your son will be OK. There is no danger to his life, but his developmental pattern will not be like that of a normal child. We have already asked for a neurological consultation from Dr. Shiven. He is the best in the city” Dr. Rajeev tried to end the conversation.

“But, will he be able to go to school, Doctor?” Suma spoke for the first time as she was trying to put things together.

“Now, you see. It is too early to say anything. As I said, he could grow up to be pretty close to normal. But, it all depends upon how things develop from now on. As such, we are starting with some deficit. Some, I say.” Dr. Rajeev tried his best to keep things calm and composed.

“Dr. Shiven is better equipped to help you in this matter. So you can go and meet Dr. Shiven now.”

“And yes. We are thinking of shifting the baby to the room in a day or two. As he is gaining weight and his feeding has also stabilized. We need to acclimatize him to the real world. So, please get in touch with the admin to arrange for a room. After these five to seven days stay in the room, we will discharge you guys,” Dr.Rajeev suggested as Suma and Ramakanth were leaving the room.

“Thank you, Doctor,” Ramakanth said as they got up and came out of the Doctor’s consulting room into the waiting lounge.

Ramakanth and Suma sat down on one of the benches near the big glazed window without talking a word. Because it was the non-consulting hour, the waiting lounge had only the regular hospital staff busy in their mundane work. They sat there, without exchanging a word but sharing a million thoughts just by looking into each other’s eyes. Outside, the weather, which was gloomy since morning, had given way to torrential rains. They could see rain lashing the window panes as if mimicking their emotional turmoil. There was mayhem of contradictory thoughts in both of their minds. There was denial, utter shock, violent anger, self-pity, extreme fright, paralyzing panic and they were both totally lost in this battle of emotions. They felt as if they have lost control of their lives and some demonic force has taken over and controlled these things.

“OK,” almost after five minutes, Ramakanth whispered as he put his hand over Suma’s shoulder and pulled her closer. Suma, behaving like a zombie, suddenly bursts into a loud cry, tightly hugging Ramakanth. Ramakanth, who had curbed all his emotions, fears and tried to focus for the last twenty days, lost all his restraint and cried aloud for the first time. It was apparent that he had lost hope and couldn’t think straight. There seemed to be a competition between the pouring rain outside and their overflowing tears. Oblivious to the stares from the onlookers in the hall, they were venting out their angst and hopelessness in continuous sobs.

“We will be OK, Suma,” whispered Ramakanth.

“No, No ….. How do you say this?” What have we done to have such a child? Why is God being so unfair to us?” Suma was shouting. “We didn’t have a child for ten years, and we craved for one. And now that we have one, God has given us this. Why?…. Why Ramakanth?”

“I know, Suma. We were just coming to terms with all that happened in the last twenty days. We were able to think positively…… learning to cope. Now, we have to face this…… What future will be our baby have?” reasoned Ramakanth.

The rain had subsided into a slight drizzle. Both mothers who were waiting near the NICU came down to check on what was happening.

“What happened, Suma? Is everything alright? What did the Doctor say?” both Mayi and Mummy were talking simultaneously. They were apprehensive, seeing the usually composed Ramakanth’s grief-stricken red face.

“Arrey, Deva!!!” Suma’s mother let out a cry and sank into the chair adjacent to Suma.

“What is all this, Ramakanth? Things were going on so well,” demanded Mayi.

Ramakanth, who had calmed down, told them everything the Doctor had explained and then added. “This risk is there with all the pre-term babies with low birth weight, Mayi. So we were just thinking positive and hoping for the best.”

“Is there no cure for this?” demanded Suma’s mother.

“We have an appointment with Dr. Shiven, the Neurologist, today evening. We will know the details only then,” said Ramakanth.

 

By evening Suma had developed a high fever and was shivering. The strain, taken in the past twenty days plus the news of the baby developing complications, had taken its toll. She no longer had the strength and the willpower to continue the struggle. The Doctor had asked her to rest until the fever subsided. And not to worry about the baby’s feeds who was put on infant formula food.
So, in the evening, Ramakanth met Dr. Shiven with all the menfolk in the toe. Dr.Shiven explained to them all about CP, coping with it, and the symptoms one should look for. He asked them to meet him after 15 days after their discharge so that early intervention therapies could be started.

After returning from the Neurologist, the entire family sat down to ascertain the situation and cope with it. The men explained all that transpired to the women of the family who were entirely broken, especially Suma. She refused to accept this fact and was developing a kind of aversion towards the baby and life in total. Something like this was not known in their family. They were just getting comfortable with a pre-term baby.

The elder’s discussed and counselled both Suma and Ramakanth to accept the situation and be bold. Their point was the baby is here in this world. It’s not his fault. In fact, he is suffering more than any one of us in that box. He has just learned to breathe and feed. So think that it is God’s will and a gift. They pledged their unconditional love and support for the baby as well as the parents.
Advising, counselling is easily said than done. It’s after all the parents and only the parents who will face the problems and challenges in bringing up a special child, not to mention the social stigma attached to it. With kind, sympathetic words from elders and their promise of unlimited and unconditional support, Suma and Ramakanth spent the night tossing and turning in the bed. Their minds and hearts were working at a frantic pace giving rise to negative thoughts filled with apprehensions. They barely slept a wink.

The following day, because everybody expected her to feed the baby, Suma dragged her feet to the NICU. And from that day onwards, she went on doing things mechanically. There was no joy in feeding, holding, putting him to sleep. The household also became very seriously gloomy, with everybody talking only for the sake of it.

As told to them, doctors shifted the baby to the room to adjust to the outside environment. Also, the mother and the other family members get the hang of handling the baby without the nursing staff’s assistance. There was no joy or excitement in Suma or, for that matter, any family member in this. Ramakanth, on his part, was trying to be as practical as possible.

The five days in the room sailed by, with Suma and others becoming more and more comfortable. There was no excitement in them. The family members were not looking forward to the usual joyous moment of taking the baby home. But at the same time, Suma was getting attached to the baby and started doing things meticulously and took all the care to make him comfortable… She realized that the baby had begun to cling to her for protection in the last five days and started recognizing her. The baby used to be soothed whenever Ramakanth lifted him. On the fifth day, after giving a tub bath, Suma prepared the baby by putting him in good clothes. Ramakanth was there to assist her all along.

When Suma took the baby on her shoulder to burp him, his soft silky hair touched her chin as the baby snuggled onto her closing his eyes. As to say, “Thanks, Mommy. I’m in safe hands.” She felt a wave of comforting feeling in that touch as she hugged him tightly. She could, for the first time, notice how beautiful his eyes were. The baby pink complexion had become much brighter and was shining in the morning sun. And suddenly, her motherly instincts took over her, and she sobbed, holding the baby. Ramakanth was unable to understand.

She turned to him and said enthusiastically, “Ramakanth, we are taking our baby home tomorrow, right?”

Ramakanth was taken aback by this sudden change of tone. He could see that she was smiling and kissing the baby.

“Yup, that’s right. I will clear the bill today and get clearance for tomorrow morning’s discharge,” Ramakanth stated.

“Yeah, But we have to see the auspicious time, Na? We haven’t even shown his Kundli. Why have we not done that? So that we can choose a good name based on his nakshtra.” beamed Suma and broke into a lullaby.

Ramakanth was shocked to see this change and went near the cot where Suma was sitting with the baby in her lap.

Looking at the Ramakanth perplexed face, Suma said, “Why are you starring like this? I am fine and in my senses, OK.” and then became serious as she kept the baby near her.

“This is our child, Ramakanth. Whatever he is, however, he is. He is our blood and flesh. If we reject him, where and how will he survive and flourish? We need to accept him as he is and enjoy all little moments. Treat him as normally as possible. Who knows, he might grow up near to normal. He might not turn up into a genius, but he will be OK, I guess.”

“That’s true, Suma. We need to surround him with positive energy all the time. Bless him with good health and seek a blessing for him. I was only worried about you; you looked so shattered that I felt suicidal. Now that you are back into this world, I can conquer it, or us three can conquer it.” Ramakanth was talking enthusiastically. He took out the mobile phone and called Appa to ask him to go to the Purohit to get baby’s kundali made and find out a good auspicious time to the baby home.”

Dr. Shiven and Dr. Rajeev were standing near the door … Dr. Shiven said, “I am glad to see you three in such a happy mood. Be positive. Miracles happen every day. I am with you guys. Everything seems to be OK. You can take him home tomorrow. See me after a week. Good luck.”

 
Kalyani Sreedhar Kakade
 
 
 
Tithi Icon

17, Ashadha

Shukla Paksha, Dwitiya
2076 Paridhavi, Vikrama Samvata
Singapore, Singapore

 

 
 

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