Tangled

Should I do it? Would I be able to live with the guilt? I kept thinking.

My mind wandered to the day when I first met her.

I work as a consulting neurologist and movement disorder specialist here. It would have been just another day in the hospital, but for this particular case.

Adhira was referred to me by our neurology resident Dr Kumar.

When I saw her first, I kept wondering if I had seen her somewhere before. I couldn’t place her though. Surprisingly, her dad Raghav seemed to be a familiar face as well, but again, I couldn’t place him.

She was just 1.5 years old then and suffered from severe seizures regularly. She couldn’t feed or walk normally and seemed to have a sub-normal brain. Her limbs appeared very flaccid. She seemed to not notice me at all.

I am pretty unemotional while handling patients. Yet, some strange emotion pulled me towards her. I felt very sorry for her and wanted to help her.

I took a look at her patient record. She was born on June 10th, 2015. The same date as my daughter Shruthi. In the same hospital, this very one! Coincidence, I told myself.

Shruthi was a late arrival in our lives. My wife wouldn’t agree to an IVF procedure or surrogacy and only wanted a child by natural means. That meant we had to wait for an excruciating 13 years!

She was born on June 10th, 2015 amidst much fanfare in the family and changed our lives. Our melancholic existence suddenly erupted with new meaning.

She is a healthy and happy child.

When I look at her, those 13 years seem to have been well spent waiting!

My wife and I are paranoid about her. How could we not be like that? Those childless years were pure agony. Now, this tiny bundle is so vulnerable and that probably makes us overprotective parents.

I could feel the agony and pain Adhira’s parents were subjected to. There is nothing more painful in life than having to see your own child suffer. I felt deeply sorry for them and told myself to help them in any and every way possible.

Adhira was first reported for not feeding properly when she was 2 months old. Slowly, it had become obvious that she wasn’t a normal child. She wasn’t showing signs of normal brain development or bodily movement. She was under the inspection of Dr Ravi, our Paediatrician. Over the next few months, her condition had worsened and she’d started experiencing severe seizures too.

She was turned over to our neurology team under Dr Kumar. He felt that I should take over the case as I was the only neurologist with movement disorder specialisation in the hospital.

After feeling clueless for few months, I started corresponding with Prof. Vance, world-renowned neurologist, and movement disorder specialist and also my professor during my fellowship at the Toronto Western hospital.

He had seen only one another case like this. A 12-year-old kid from the UK.

It was diagnosed as a disease so rare that there are only 20 people in this world with the condition. Partial triplication 15 is a case of a mutation of the 15th chromosome. The condition is not completely documented yet, but common symptoms involve loss of speech, movement, severe repetitive seizures and inability to eat. There are no known treatments for it yet and I doubt there will be anything soon.

Adhira’s father broke down when I showed him the chromosome analysis report last week.

I went home heartbroken that night. Sleep evaded me that entire night. All I could see was Adhira’s vulnerable image in my mind. I got up and went to my study.

I opened our hospital management system and looked up her details. She shared her birthday with Shruthi. No, not just that, I found out that her mom had the same name as my wife. Anusha.

As a doctor who believes in luck and statistics, this coincidence was too much to bear for me.

Partial triplication 15 is a case of chance, not genetics. Statistically, it could have been any other kid on that day. It could have been Shruthi. It was Adhira’s terrible luck that chance chose her.

Her father Raghav could have been me. Poor Raghav, the pain he must be going through!

The next day, while driving to the hospital, I had a thought. A fear, actually.

I rushed to the hospital and opened our hospital management system again. I looked up Adhira’s family’s details. Adhira’s blood is O+ve. Her mother’s too is O+ve. Her dads is AB+ve.

I knew the progeny of AB and O parents can only be either A or B.

It all fell into place.

My heart sank. I tried convincing myself that I shouldn’t jump to conclusions and should get more convincing data. Yet, deep in my heart I just knew.

I looked up all labour records on June 10th, 2015 in our hospital. There were 22 cases of labour on that day. All 22 successfully delivered. 13 girls and 9 boys.

Shruthi was one of them. Adhira another. They were born almost at the same time.

Our hospital has a practice of using identification bracelets for newborn kids using mom’s registration details. The name is an important part of it. Sometimes there are people with same names, but the registration number is different and is used to identify them.

We have a good process of identifying babies to their parents. Yet, there is a very rare chance of a baby swap. I shuddered to even think of it.

I now know why I had felt Raghav was a familiar face. He resembles my own Shruthi. Adhira wasn’t their kid. Adhira resembles my grandma. I don’t know why I took the time to realise it, but I can see the resemblances clearly now.

I went blank for a few seconds. Those 13 years of childlessness flashed in front of my eyes. That happiest moment of holding Shruthi for the first time in my arms, her first words, the time when she walked on her own… everything flashed like a movie in my head.

Tears rolled down my eyes. This cannot be. How will I be able to face this? How will I even be able to tell this to Anusha? What will happen to Shruthi?

What will happen to us?

I took the day off and went home immediately. I couldn’t eat or sleep or do anything at all. Anusha kept worryingly asking me if something was wrong. I simply asked her to leave me alone. I spent the most harrowing hours of my life trying to figure out what to do next.

Thoughts raced in my head. I knew what I had to do.

Next morning, I couldn’t wait to get to the hospital. I went early at 6.30am and called Sameer in the data management team. Sameer is a good friend. I got especially close with him after saving his dad from a pretty severe stroke. He said he’d be in the hospital only by 9 am.

I spent the next two hours fidgeting and walking around in my office. At 9 am sharp, I called him again.

“Hello, Sameer here.”

“Sameer, this is Dr Rahul here from Neurology.”

“Yes, doctor. Something?”

“Umm, yes. I…, I made a mistake. Err, I need to a small change in my daughter’s patient record. How do I do that?”

“Oh, how old is this record?”

“It’s just a minor detail, but I want to be sure I do it right. It’s 2 years old.”

“Oh, I’d need an approval from central data management team for this doctor.”

“Hmm, is there any way I could override this? It’s just minor and I don’t want my mistake to go on the record. After all, it’s my own daughter.”

“Hmm, okay doc. If you are sure its minor, I will give you a super user account and you could make the change. Please be sure you do not tell anyone about it.”

“Surely Sameer.”

I took the super user credentials and logged into the system.

I paused for a minute. Am I doing a terrible thing? Would I be able to live with it?

I took a couple of deep breaths and searched for Shruthi’s record.

My hands shivered as I typed. I changed the date of birth to June 13th. I changed the mother’s name too.

Research notes:

  1. Children with world’s rarest diseases
  2. Dylan’s story
  3. NY Times story on how babies are kept linked with their moms
  4. https://en.wikipedia.org/wiki/Isodicentric_15
  5. A true case of a babies mixup in Czech

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