#HelpBabyRohaan: How A Mother Dealt With Her Child’s Rare Chronic Disease

During the course of life, we encounter countless experiences, most of which become faded memories later in life but there are few experiences which are powerful enough to change our lives completely. My life was also changed after one such experience.

There are diverse explanations and theories associated with the life. For me, life was entirely ambiguous, a combination of all explanations and theories. I chuckled, I wept like a rain cloud, I relished like a juvenile and I survived like a fighter. For me, the definition of life is “full of limitless struggles”.

Being a girl, daughter, sister, wife, and mother life disclosed full zest of challenges for me.

My life took a drastic turn in 2016 when my mother died. Being youngest, love of the whole family and closest to mother, I was devastated in a way that started a new voyage for me and my family. The news of my pregnancy was a ray of light for everyone.

Yes, this little soul will definitely help us to come out of that shock”. We all believed. I delivered my baby on 29th July 2017.

It was not the happy ending. It was the start of a tiring but hopeful journey.

On the fifth day of Rohaan’s birth, he had difficulty in breathing. The pediatrician took some tests and diagnosed him with jaundice. We packed his bag and rushed to the hospital where phototherapy (special light treatment) was performed, but his cries were so loud that those were tearing my heart. Within a day doctors announced, “There is some serious problem with your child”.

Next morning my soul screamed out when despite every effort of my husband for hindering the facts, I came to know that part of my soul (Rohaan) had a rare heart issue.

The hospital called a cardiologist. Dr. Ahmed Usaid Qureshi reached by the evening. Echocardiograph was taken. Rohaan’s pediatrician and cardiologist called us in their room and bombarded the news that Rohaan was suffering from Congenital Heart Defect. My baby is a CHD child. After a one-hour discussion, they discharged Rohaan and recommended us to a senior cardiologist.

My husband and I wanted to scream and to deny this, but we couldn’t. Sometimes the human gets so helpless, that despite every effort he cannot change his own fate. If fate will be in hands of a human, no mother would let her child went through the pain from which my son went through.

After that, we saw the most insensitive face of the people around us. Some suggested us to leave him the way he was. It is very easy to ask someone to leave his part of the body the way it is — untreated – but it is not that easy for the parents. We had a hope that our son will be alright one day.

Why should I lose hope when I never stepped back in any hardship, I faced in my life. No, I won’t – no parent will. I know that whatever will happen I will fight till I could.”

And then some kind whispers were there, “go abroad, try hard, God will help you, never give up”. We thought to give it a try.

Faisal (Rohaan’s Father) used to cry with me the whole night and next day we would gather up all our strength again. Faisal consulted few more doctors. After few days we took Rohaan for the checkup at Children’s hospital. Dr. Masood Sadiq, Dean/Prof. of Pediatric Cardiology, The Children’s Hospital Lahore repeated Echocardiography. The results showed “AORTIC ATRESIA”— a condition when there is no opening from the left ventricle into the aorta or absence of aorta, with some more complications like open PDA (a blood vessel that allows blood to go around the baby’s lungs before birth) and large VSD (hole in the heart). He asked us to take the child to Dr. Asim Khan, Assistant Professor – Pediatric Cardiac Surgery, The Children’s Hospital & the Institute of Child Health, Lahore.

We hired Uber from his clinic and reached Ittefaq hospital where he sits. The meeting with Dr. Asim made things clearer. He explained to us the condition of our child, the possible treatment, risk factor, and pre & post-surgery care. Though he gave us hope and ensure the best of his but we were a little reluctant to get the treatment in Pakistan. We had very solid reasons for that. First, It was a rare case. Secondly, such case was never handled before and there were many risk factors along with lack of basic infrastructure and handling. We did not want to take any risk.

We started to contact doctors in Karachi, Islamabad and abroad. We sent all reports to Birmingham hospital, Boston hospital, Italy’s specialists and German surgeons but received not a single positive response.

The procedure suggested for Rohaan’s surgery was Norwood surgery. We read all articles, all researches on such cases. Only one thing flashed on our screen “low survival rate, highly risky”. Our heart denied this. It uttered, no he will live.

Our research finally ended on an Indian Doctor, Dr. Rajesh Sharma. The word Indian trembled to us, for the common man in Pakistan visiting India is like visiting the moon. Still, we emailed Dr. Rajesh Sharma who is Director of Paediatric Cardiology Department, Jaypee Hospital, Noida. He read the case and gave us hope with our case. He told us that the surgery has to be done as early as possible. He clearly told that we could not delay it more than a month.

A month was our deadline and we have to complete the visa process in this short time. It was our only hope and we did not want to miss it. We gathered all our energy and got started with it. Faisal used to leave home with a new spirit every day. By the evening when he would return, he would be so tired and broken but we would start with the same spirit next day.

On one side we were working on B-form and passports requirements, and on the other side, we were publicly asking for donations. We made a Facebook page with name Help Baby Rohaan and contacted some journalists and media professionals to help us with it. While on the other hand with the help of few friends managed to submit a grant application in CM office Punjab (with no progress yet).

B-form took one week and our passport took 10 days to get issued. When we went to apply for the visa we came to know that India had shut down visa services for Pakistani nationals. We somehow applied for the visa using our contacts but we wanted it quicker. We had already crossed the one-month deadline. My little one stopped taking milk, developed more issues with breathing and sleeping. Still, we had no response from India.

But the one who has created everything knows better. He sends help when we are divested. Same occurred with us. One kind person advised us to appeal to Indian authorities on Twitter. Okay, let’s give it a try, we thought.

Appealing on Twitter seems easy but how many chances are there that your tweet would get noticed? What if it would also not work? We decided to make a trend on twitter to get our treat highlighted. We called our friends to contribute to our cause on Twitter. We started tweeting at 12am and then a wave aroused. Numerous people started quoting and retweeting our tweets. By the morning, there were thousands of tweets requesting Indian foreign minister, Mam Shushma Sawraj to issue a medical visa to our baby Rohaan. Although many people were tweeting using our hashtag #HelpBabyRohaan but we were not receiving any response from Indian authorities. We lost our hopes.

And when I thought it was the end of it, I heard the notification sound. I picked my cell phone, unlocked it. The notification read, “Shushma Sawraj liked your tweet”. I couldn’t believe my eyes. Very next moment, she tweeted in which she affirmed that India would issue a visa to our baby. I called my husband and showed him that tweet. We both were crying. He immediately called Indian high commission in Pakistan. He also sent them an email along with that tweet’s screenshots.

On 29th August, Indian High Commission tweeted that our visas have been granted and passports were dispatched to Lahore. A moment of relief. We bought tickets for very next flight available.

On 6th September, we boarded the flight for New Delhi. My elder son was in a stroller and Rohaan was in my lap. The flight was delayed due to security concerns. Rohaan was crying in my lap. His heartbeat was so loud that the person sitting next to me could also hear it. It ended up on vomiting. I ran towards the door and stood there until the doors were closed.

After 90 minutes, we reached New Delhi airport. The staff at the airport was very polite to us. They knew that our visas were issued on special instructions of Mam Shusma Sawraj. They completed our immigration process on an urgent basis after which we left for the hospital.

By the time we reached the hospital, it was the night. Rohaan was admitted immediately. After checking him, the doctors directed the nurses to shift him to Intensive care unit and to infuse prostaglandin (a steroid given by IV which help keep the PDA open to permit blood flow to the body).

On 8th September his surgery was performed, after so prolonged surgery we were expecting nothing, Dr. Rajesh Sharma came out of operation theater and informed us that Rohaan’s bleeding was not stopping. They waited for it to stop. However, after few more hours, Dr. Sharma gave us the good news. The operation was successful. Rohaan’s heart collapsed the same night. He was kept on artificial support for days. I saw his chest open. Most of the times, his eyes were wide open, which was ripping me from inside.

Rohaan after his first surgery

I saw my son fighting for his life — procedures after procedures, testes after tests, on and off ventilators. We visited him regularly until doctors permitted us to stay with him during instructed timings. His chest wound wasn’t closing due to slow healing and he had difficulty in breathing due to Tracheobronchomalacia (occurs when the walls of the airway are weak and can cause the airway to become narrow or collapse).

“Yes we are human, we have nothing in our hands, but we have faith. I, as a mother, was persistent enough in begging my son’s life and to see a miracle. We all heard when there is a will there is a way, I wanted to see that happening, and it happened, Alhamdulillah”.

After few months stay in a critical intensive care unit, Rohaan was finally shifted to the ward. We stayed there until he was stable and his feeding tube was removed. We stayed in India for few months. In that crucial time, whole Jaypee hospital staff especially doctors, Guesthouse people, and visitors in hospital stood by our side. Even my toddler was so emotionally upset that I use to take him to a play area in Noida, to bring him back to normal life, the staff even knowing that I am Pakistani national, cared and loved my first son (Rayyan), that it was the only place where I could leave my son without any fear — which I could never think of it even in my own homeland.

We faced a lot of difficulties in this whole journey. We found that there were very few nurseries for infants with enough facilities in a big city like Lahore. Then there is lack of facilities and staff for heart patients especially infants. Surgeons and doctors are there but still cases like Rohaan’s is not operatable here due to lack of infrastructure and technology. Moreover, our system is so messed up that medical cases are not handled on urgent basis.

Till this time, our savings were spent. We took the loan from our friends, relatives, and parents. That was also not enough. We decided to raise fund for our child. We used our Facebook page for raising funds. we did receive help but that was lesser than our expectations. We do thank everyone who contributed and made that surgery possible.

When we returned home, I used to take Rohaan out, sometimes,  just to normalize his life which he lost in the hospital beds. That outdoor activity brought some unwanted schooling as well. Some females and males told me to raise his head up, to hold him properly, and to put him in an upright position — without knowing his medical issues obviously. I realized how harsh our kind behaviors can become sometimes.

Being the parent of CHD child, I want to educate people about CHD. CHD is not just a defect, it’s a mental stress and financial burden.

Our journey didn’t end here. The step one of Rohaan’s Norwood surgery was done, but he has to go through another surgery soon. As such Congenital Heart Defects need to be operated for an unlimited time, until the child stops growing, along with it if others complications do not occur like leakage of heart tubes or blockage etc.

We are still fighting for the life of our baby. We have asked our friends to link people to “Help Baby Rohaan” Facebook page. We as a mediocre cannot afford millions in a limited time. We request people to support us financially and morally in this hard time. We hope that with your help and prayers, our son will get to enjoy a healthy life soon.

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