When Doctors are Wrong: Lessons from the NICU

By Racheli Krongold

https://www.aish.com/sp/so/When-Doctors-are-Wrong-Lessons-from-the-NICU.html?s=mm

Dear loved one who is frazzled, dazed, exhausted and confused,

You are lost in a sea of emotions, feeling like a walking zombie, going through the motions.

You are in a crisis.

I know. I've been there. I know how much it hurts. And I can’t promise you everything will be okay.

I won’t tell you that you are strong enough to get through this. Even though you are, you don’t feel it right now.

I won’t tell you that it’s good to be grateful for all the good because you probably already are, and that doesn’t make anything easier right now. It might help later, but not now.

But I can tell you, with your permission, how I got through the hardest moments of my life, my crisis. I will try to explain to you how I not only got through the challenge, but how I also saw beauty in it.

On May 14^th, 2018 I gave birth to my beautiful, perfect baby boy. He was baby number six. Yes, our life is busy, hectic and challenging with so many kids. But it's fulfilling, meaningful, inspiring and humbling.

The kids were so excited when we brought baby Elya home from the hospital. So much love filled our home!

But that whole time I felt something was very wrong. I couldn’t put my finger on it; I knew this baby was not like the others. He was always sleeping, he never woke up to feed, and very quiet.

Doctor's visits and blood work revealed normal numbers of jaundice and nothing else. He continued to produce wet diapers, which ruled out dehydration. I was baffled.

After his Brit Milah, we knew he needed to be seen by a doctor. His temperature was dropping. The look on my pediatrician's face when he saw Elya, 8 days old, sick and weak, told me I was right: something was very wrong.

He weighed Elya, listened to his heart and then he said to me very calmly, “You must get him to the emergency room right away and you don’t have time to go home first.”

“Should we call an ambulance?” I said in a robotic tone, my body still and only my mouth moving.

“Yes,” he said and left the room quickly. He asked the receptionist to phone 911 right away and came over to my baby with an oxygen tank.

The ambulance ride is a blur. I only remember wondering over and over why it was taking so long. We drove down with sirens blaring, yet it felt like I was in the back of that ambulance for hours.

Our beautiful baby was whisked away on a stretcher through the back entrance of the emergency room into the main trauma room. He was greeted by no less than 30 doctors, nurses and specialists, all masked and gloved with their hands up at their faces waiting to grab hold of this fragile boy, my boy.

I don’t know how I walked into the room; somehow my feet knew just what to do while the rest of my body was in complete shock.

They sat me down on a chair at the back of the room and began explaining to me all the things they were doing or going to do to Elya. They let me know very early on that I was in a room with some of the best trained doctors in the country and that I should find comfort in that.

My husband arrived at this point – he couldn’t ride with us in the ambulance – and they sat him next to me on a chair. They began explaining everything to him as I sat frozen staring at the doctors working quickly and with trepidation on their faces. The fear in the room was palpable and added to my shock.

I looked over at my husband, my face swung around to greet his in what felt like slow motion, and his eyes met mine. And in that moment we burst out laughing and crying all at the same time. I guess that’s one of the body's way of reacting, coping, who knows? It was strange. And scary.

I don’t quite remember how we got to the waiting room in the NICU, but we waited there for the doctor to arrive and tell us where our baby was. I’m not sure where my head was at that point. I just remember so many tears it was getting hard to see.

Enter the head of the NICU, a middle aged doctor, stern, cold, but somehow compassionate underneath the hard shell. I wanted her to tell me what was happening right then and there, I didn’t want to wait. Where is Elya?

She wanted to meet in a private room, a boardroom. I entered the boardroom, my feet somehow knowing what to do again. My husband and I sat down across from the doctor. She stared at us, with sad eyes. Suddenly, I no longer wanted to know what she was going to say. I didn’t want to know where Elya was. I wanted to disappear. I wanted to go back in time to when things were fine, to when things weren’t scary.

“You have a very, very sick baby,” she said slowly, each word clearly pronounced.

I put my head down on the table and wept. I wept so hard I could no longer open my eyes from the swelling.

We were given our sentence: a 70% mortality rate.

At some point in the first week of his life Elya had contracted a virus called Entero Rhino Virus. No one knew since these things are so hard to detect on babies.

It is a common virus carried in many people that can show up as sniffles, cough, fever, or nothing at all. We will never know where or when he contracted it, but it did a lot of damage in his first week of life.

Sometimes viruses can come and go, and sometimes they attack one's heart. Elya's heart was enlarged and was no longer functioning properly.

The MRI showed extensive brain damage, so much damage that the doctors assured us he would not be a candidate for a heart transplant. His other organs were all suffering due to the decreased efficiency of the heart. The lungs, the kidneys, everything was so, so sick.

Elya lay helpless on a ventilator.

They told us he would not be coming home.

Anxiety and Fear

Dear parent, you are scared right now. You might even feel physically sick from the fear and anxiety building up inside of you. It’s almost paralyzing

The fears were like monsters lurking behind each corner. I was running from those monsters.

I found that the challenge itself was not as powerful as the fear of the challenge.

I gained a beautiful insight from another mother in the hospital. People often say, “God doesn’t give you a challenge you can’t handle.” I know, it’s annoying and the last thing you want to hear when you feel like the earth is about to collapse under your own two feet from the weight of your challenge! But she told me an insight I will never forget. She said if it is true that we are only given the strength we need to get through today's challenge, then there is no use looking into the future at all those scary things that may or may not be. All those terrifying visions of the future. Because you’re right, you don’t have the strength for those challenges you weren’t given yet!

This is your challenge, today. It’s yours. You own it. Only you were given this specific thing at this specific time. And somehow, even though you truly don’t feel it, only you are capable of rising through it today.

Your Child's Best Advocate

Dear Parent, we can only control our minds, but not the outcome of the situation we are in. But we can be advocates – for ourselves and for others.

There is a tendency to feel comforted in good hospitals, great doctors, or good advice, and to leave it at that. But I found that the doctors were all happy to get second opinions, consult with outside specialists from other countries, and even try new technologies. The more involved we became, the better Elya’s care became.

And I began to find comfort in knowing that we were doing everything we could do to help him. I found comfort knowing I was strong enough, and capable enough, to become part of his medical team.

I felt empowered.

This newfound strength gave way to a clarity so hard to find. It gave me the courage to fight everyday against those inner thoughts. Advocating for my baby was what actually helped me see that I was strong enough to get through this challenge.

And when you find that strength, you will begin to realize that you were perfectly chosen for your own mission.

One of my friend’s gave me a ride down to the hospital one Friday afternoon. I went home to pack a bag for Shabbat so I could spend it in the hospital with my baby.

It was at a time when I felt very broken and discouraged. Here was a friend of mine who I know has been through tremendous hardship and I valued her insight.

I got in the car and looked over at her and asked, “Why is this happening to me?”

“Listen,” she began, as if she was waiting for this permission to give her advice. “Soon you will be home, holding your precious baby and no one will be praying for you anymore, no one will be sending you meals, and soon you too will forget about this whole ordeal. But right now, in this tiny window of a moment in your life, there’s an opportunity for greatness. A level you can’t really reach when things all seem ‘good’. So use it. Grab hold of it, and grow. It will hurt, but growing hurts.”

And that was the moment I began seeing this challenge as an opportunity rather than a curse.

Where we are today

Elya miraculously defied all the odds and slowly, over the course of many months, began to recover from this terrible diagnosis.

His heart got stronger, his lungs cleared up over time and his kidneys in turn recovered.

He was taken off of the ventilator and began his process of rehabilitation.

#Incredibly, the neurologists came back months later to inform us that all of the damage they thought they saw on the MRI was just from the inflammation from the virus.

Slowly, very slowly, he began to learn to eat orally with the help of therapy.

Incredibly, the neurologists came back months later to inform us that all of the damage they thought they saw on the MRI was just from the inflammation from the virus. Elya had no brain damage.

The miraculous day came when despite his grim prognosis, we packed up our bags and brought Elya home. We feel overwhelmed with gratitude to to be reunited as a family again.

Elya spent four long months in the NICU so now our days are busy with occupational therapies and feeding therapies to make up for that time. He continues to thrive and inspires us every day with his strength and motivation.

I belong to a support group for parents of those who suffered from viruses and every day I hear of stories just like ours but with different endings. I recognize each day how lucky we are to have Elya with us today.

Dear Parent, I don’t know how your story will end. And there’s little comfort in the unknown. But I do know that the One who writes the story knows the best ending for each character.

The other day I walked into my kitchen with my toddler by my side to get her a drink. As we walked side by side I noticed that her eyes were fixated on my feet as I walked. So I just kept walking. I walked in circles in my kitchen and she followed the entire time, staring at my feet.

Her view is so limited because of her small size. From her perspective, most of the time she sees us from the knees down and since she just trusts that we are guiding her in the right direction, she follows!

This is how we are with our Creator. A small child and a loving parent.

We only see a small glimpse of Who He is and how He works. We are so small and we can’t always understand the ways of God.

But knowing that we are small and that He is so big and loving, we can trust His lead and know He is guiding us to exactly where we need to be.

And that is the most comforting thing of all.