A little piece of heaven

I’ve been thinking a lot about yesterday’s post. About how much I want to be a balanced, stable, peaceful, happy person.

Have you guys heard the saying that it takes 21 days to break or create a habit?

Well, I’ve decided that I am going to give myself 21 days to create new, helpful habits. For example, starting tommorrow, I will start my new bedtime routine. I also want to start other habits like meditating every morning, doing yoga every day, and yoga nidra every afternoon.

One of my biggest obstables to a bedtime routine is this – blogging. Every night after Nathan goes to bed I go to my computer to write that day’s post. I’ll read a few message groups, read other blogs, and think about what I want to say for the day. Then I finally get around to writing the daily post. By that point I’m tired but then I remember this and that that’s still left to do. So by the time I’m done it’s usually at least 10 or 11pm. And then I’m too tired so I don’t want to do anything “healthy” – I just want to read a little or veg out, then go to sleep.

So I’ve decided to take a break from blogging for a little while, so I can try and establish a new routine/pattern.

I will try to at least post quick updates about Nathan. It’s his blog in any case, even though I’ve mostly thoroughly hijacked it.

If you are used to checking every day or two, I am sorry. I promise I will get back to daily updates once I have better habits established. I promise I will update at least once a week.

Thank you so much everyone for caring and reading about us. I hope to come back recharged and full of energy and positive habits.

Thank you for everyone who commented about our malpractice story. I am so grateful for the outpouring of support.

I wrote the post because I had to share the experience – I think it affects every parent of a child with special needs. Heck it affects every parent. Because at some point every child will get sick and will be at the mercy of doctors and every parent needs to know that you are in charge.

But generally, I have emotionally dealt with and processed everything that happened. I know I make things sound more dramatic when I write. I’m half Italian half Colombian – drama runs through my veins. But I have been blessed with wonderful friends and a wonderful partner who has helped me feel everything that had to be felt, and to move on. I have healed and continue to heal on a daily basis.

Most importantly, I have a beacon of light attached at my hip who will simply not allow me to be stuck in negativity. Mr. Nathan demands joy from me. He draws it out of me.

What happened to him was terrible. But I take my cue from him. He’s moved on. He’s happy. He just wants to love, be loved, and to laugh and be happy.

I just felt it was my responsibility to share, and to bring awareness to this issue.

Also, thanks to several reccommendations, I’ve decided to take further action. At the very least I’m going to write a letter to the medical board regarding this situation. I am also going to send our story to the paper. I think others deserve to know what they face when their kids are hospitalized and when their kids face illnesses. I would really lose sleep if I didn’t do anything about this and then because of my silence, other kids suffered the same or similar fate. I already got an email from a mother whose child sees the same djoctor as Nathan and she is going to be switching doctors. So at least I know by sharing we have protected one person.

Stephanie – I am sorry you had to go through the same thing. How old is your daughter? I hope you have made your peace and found better doctors.

Laura – thanks for the reccommendation, I will take you up on on that!

Susan – thank you for the virtual hug. I really needed it. I felt vulnerable after writing the post and it was nice to be hugged 🙂 I know that Beth is doing so well and I am so happy for both of you! Our situations are different but the same – we all want our kids to be as happy as they can be. And we worry about them just the same 🙂 I am really not torturing myself about what happened – I know I did the best I could at the time. I do wish I’d known more when my journey started. Which is why I share so much in this blog – so others who are just starting can receive some of the advice/guidance that I didn’t have. I do feel sad sometimes that Nathan was cheated of more development but it doesn’t last long – it just takes a cuddle from him and I’m happy again.

Gala – we did go through hell. But we have come out the other side and now we appreciate every laugh, every drooly kiss, every nibble on the cheek – that much more. Thank you for your support and compassion.

Amber – I love you too! It did work out – Nathan is alive and happy. I hope we get to see each other again soon. We miss you guys! Nathan can’t wait to see Brandon again (and I’m looking forward to us hanging out too).

Thank you to everyone who read our story – your support means so very much.

I’ve been thinking a lot about closure. About how I need closure to Nathan’s “sick a lot” days. About how I need closure to my earlier “do a lot of everything but not enough of anything” approach. And most importantly, I need closure for the things that happened to Nathan when he was just born.

So let me tell you the story of Nathan’s first six months. Have a seat, get comfortable, this is going to be a long post.

When Nathan was first born, he was perfect. He nursed, he slept, he seemed a very content, wise, happy little soul. For two weeks I thought maybe there was a mistake in the diagnosis because I had a perfect baby.

But on his 14th day of life, the screaming began. And when I say screaming, I mean hysterical, unstoppable, agonizing shrieking. He seemed to be in excruciating pain and there was nothing we could do to stop him from crying. We swaddled, swung, shushed, danced, jiggled, paced. We did everything – nothing worked.

We went to his pediatrician – “oh he must have colic”. We went again – “oh his nights and days are turned around:. We went again – she realized something serious was affecting Nathan and sent us to test his heart, reflux, and an ultrasound of the head. Once she saw the ultrasound and saw that Nathan’s head circumference was growing too rapidly, she sent us to a neurosurgeon.

I remember that day so vividly. It is ingrained in my memory. She told us to pack our bags because Nathan would need emergency shunt surgery.

We went straight to the hospital without packing our bags. When we got to UCLA to see the neurosurgeon, we went to his office. He took one look at Nathan and said, “Oh, he’s okay. No hydrocephalus. Don’t worry, go home, he’s okay. We can do an MRI later. But this child doesn’t have hydrocephalus. Go home, have fun.” That was it. 5 minutes and we were out of there. No medical examination. No review of records. Nothing. Just a quick glimpse, and we were out the door.

So we spent another month and a half with excruciating shrieking agonizing baby. Here are a couple of videos of him during this time:

http://prayfornathan.org/video/video-18.php

http://prayfornathan.org/video/video-27.php

There was no way to calm him. No way to make him happy. He was always in pain. Believe it or not I uploaded these videos because they were the best we had of this period.

Finally, the pre-scheduled MRI arrived that the doctor requested at the end of September – on Nov 7th. Yes, it took 1.5 months to have an MRI of a child diagnosed with holoprosencephaly and with evidence of hydrocephalus who cryed uncontrollably. Why? Because unless the neurosurgeon requested it done as an emergency, he was just added to a general queu and that’s how long it took. Of course I only learned about this much later.

When the doctor reviewed the MRI, he diagnosed Nathan with hydrocephalus and showed us where the brain stem was compressed. So he scheduled the surgery – 10 days later. Yes, 10 more days of Nathan in agony.

What’s more upsetting – it wasn’t just that Nathan was in agony. It was also that every day, every minute that he didn’t have a shunt, his brain was compressing more and more. Receiving more and more damage.

The white stuff is his brain. The black stuff is the fluid. The thing at the bottom that looks really squished – that’s his brain stem. He could’ve died during that period. The fluid was building and building and damaging cells and neurons and causing him insane pain. All because the doctor couldn’t give enough of his time to my son to examine him thoroughly when he saw him 6 weeks earlier. All because he didn’t value his life or well-being enough to review the medical records.

Finally the doctor placed the shunt, and for the first time in 3 1/2 months we got to see the happy baby that came out of my womb.

Here he is after his first surgery, wondering at a life without agony.

A week after the shunt was placed, Nathan started acting sick. He started crying, running fevers, vomiting. I had read the signs of shunt infection online and took him to the pediatrician. The pediatrician saw the two incisions and sent him straight to the neurosurgeon. Here’s what the incisions looked like:

http://prayfornathan.org/video/video-incision.php

http://prayfornathan.org/video/incision-head.php

And you know what the neurosurgeon did when we got there? He met us in the hallway, took a quick peek and said, “Oh he’s fine he’s fine. He’s not infected. He’s fine, go home.” Yes, he sent us home without a proper examination – again.

A couple of days after that, I took him to the UCLA emergency and they admitted him. They gave him antibiotics and then waited for instructions from, guess who, the neurosurgeon. The neurosurgeon had one of his minions evaluate Nathan and they said, “Oh he’s fine he’s fine. Probably gastroenteritis or something like that. He can go home.” They didn’t tap the shunt. If you don’t know anything about shunts, you wouldn’t know that unless the shunt is tapped, you can’t tell if there’s an actual shunt infection or not. The only way to know is if they tap (take out fluid from) the shunt and grow a culture. But since the shunt wasn’t tapped they sent us home.

Nathan was better for a couple of days. Then the crying, vomiting, fevers, etc started again. The trips to the pediatrician started again. The calls to the neurosurgeon started again. Don’t worry, probably just a virus. Finally, December 24th, 2006 and I just knew I had to do something. His pediatrician told me to go to the UCLA ER. “DO NOT LEAVE until they tap that shunt”.

So off we went to the ER. And again we were told, oh don’t worry, he’s fine. At that point, I’d had enough. I told the doctors I would not leave that hospital until the shunt was tapped. I think they saw the roaring tigress in my eyes and finally acquiesed. They admitted Nathan overnight with assurances that there was no way he’d have an infection. That if he had an infection he’d be comatose. And if there was by any chance an infection there’s no chance it’d be bacterial or he’d be dead already.

Guess what? The next day we got the results and yes, Nathan had bacterial meningitis. He could’ve died. It was a miracle he didn’t die. Yes, another miracle. Maybe that was the last of Nathan’s miracle quota? At this point he’d survived 3 attacks on his life. And he wasn’t even 4 months old.

So finally they took him into surgery to remove the infected shunt and placed a temporary shunt. We lived 23 days at the hospital. He couldn’t move from the hospital crib because he had a hole in his skull with a tube coming out of it which was draining the excess fluid. It was 23 days of hell.

A couple of days into it I confronted the neurosurgeon. I wrote down a list of everything that had happened and asked him, “Why? How could you do this to my son?” And he said, “I’m sorry. I should’ve been more careful. I just didn’t expect him to have an infection. I haven’t had a case of a shunt infection in 4 years. I didn’t think Nathan would be the first.” I told him that if I even saw another hint of carelessness with Nathan, he would lose his head. After that he was extremely thorough and cautious.

And you must be wondering, why? Why did I keep going back to him? Why did I continue letting him treat Nathan? It’s the same question I ask myself now. This question haunts me and steals my peace.

The truth is, I just didn’t know any better. Kids with special needs do not come with instruction manuals. You take people who have no medical training or experience and ask them to make decisions for their child. You had bucketloads of fear, stress, sleep deprivation, ignorance – and that’s your typical new parent of a SN child.

Additionally, I had always been told doctors knew best, that I should trust doctors. Even though everything pointed to the contrary, I honestly believed that the neurosurgeon was doing his best and had Nathan’s best interest at heart. My tendency is to believe the best in people. Plus when you are put in a situation where you are ignorant and your life’s child is in someone’s hands – it’s difficult not to trust.

Most importantly, I just didn’t know better. I was new to the journey. I wasn’t a seasoned warrior, just a rookie freshly out to battle. I had been told he was a good doctor, one of the best. How could this doctor fail my son? Was it that in his eyes Nathan’s life was worthless?

So Nathan spent 23 days getting bombarded, and when I say bombarded I mean bombarded, with antibiotics. They were shooting him up with a concoction that could knock out a bull. It was necessary to get rid of the infection, so I don’t fault the infectious disease doctors. It had to be done.

Finally the infection subsided and they internalized the shunt again, and we were able to go home. And after that 3rd surgery I finally got my son back.

At that point, I was just happy to leave that phase of our life behind and to move on with our lives. I knew Nathan had been seriously wronged. But I didn’t want to look back, I wanted to look ahead, to enjoy a happy, pain-free baby.

Fast forward to end of 2008. I started wondering why Nathan wasn’t progressing faster, why he still couldn’t hold up his head, bear weight on his legs, etc. The amount of therapy he was receiving should’ve led to more functional gains. Something wasn’t right. So I started digging, reviewing medical records, journaling, researching online.

And what I found was devastating. I found that the longer hydrocephalus is left untreated, the more permanent damage a person receives. If it had been treated early, the damage would’ve been minimized. But left untreated, the damage was severe and permanent. Same with bacterial meningitis. If treated early, there are no signs of permanent damage. If left untreated for more than a few days, the damage is severe and permanent.

I was floored. Not only is Nathan suffering from damage due to his brain malformation, he’s suffering from damage given to him by this negligent neurosurgeon. I was outraged, devastated, destroyed. How could I have let this happen to my son? How could this doctor do this to him? How could this have happened?

And to top it all off, I then found that Nathan’s body was hardly functional due to the damage from the overuse of antibiotics. The 23 days of antibiotics left him with a leaky gut and candida overgrowth, so nutrients were not reaching his brain. He had a starving brain. On top of the holoprosencephaly. On top of the damage from untreated hydrocephalus. On top of the damage from untreated bacterial meningitis.

All because of one doctor’s negligence.

Needless to say, I started calling lawyers. All of them told me to send them a mountain of paperwork so they could review the case. I spent many many hours getting the medical records, writing a timeline, gathering evidence.

And this week I got a call from the best malpractice lawyer in Southern California. He told me he reviewed the documents. And he was sorry that my son was a victim of medical negligence. But unfortunately, he couldn’t help us.

And why, you may ask? How is this possible when there is an obvious case of medical negligence and malpractice? Even his pediatrician agreed about the neurosurgeon’s malpractice. There was no question at all about it.

And the answer to this question is why I am writing this post. I am writing it as a warning. I am writing it because if you have a child with special needs, you need to know what I am about to say.

The reason no lawyer can take our case is because there is no way to prove that all of the additional damage changed Nathan’s future and quality of life. Since he was brain damaged to begin with, there’s no way to prove that everything he is now suffering isn’t a result of the original malformation.

I was astounded. So you are telling me that the fact that 99% of cases who have untreated hydrocephalus and untreated bacterial meningitis for more than X days leaves permanent brain damage isn’t enough proof?

Apparently not. Because since he was already damaged, it is absolutely impossible to prove that any further damage changed the quality of his life. How can we prove that the lack of head control is due to the damage from bacterial meningitis or from untreated hydrocephalus when it could’ve been caused by the holoprosencephaly? Even if 66% of children with holoprosencephaly can sit unassisted, how can we prove that Nathan doesn’t belong to the other 34%?

So if your child has CP or a malformation or suffered an accident – they are already pre-damaged. If a doctor harms them further, since there is no way to differentiate from the original damage – there is no legal case.

I can’t tell you how much I have cried about this. I can’t tell you how painful it is that the legal system can’t help my son because he had preexisting brain damage. I can’t tell you how vulnerable this makes me feel towards the medical establishment. It means that any doctor can do anything he wants with Nathan knowing there can be no penalty, knowing they will never be accountable for any damage they inflict on my child.

It’s heartbreaking. Because not only does this mean that the legal establishment can’t protect our kids, it also means that this doctor is free to do it again to other children. It means this doctor will suffer no consequences for his actions. And it means Nathan has to live with the results of this doctor’s negligence for the rest of his life. That the legal system can’t help those most vulnerable.

But I write this post to bring closure to this chapter of our lives.

I hope that by sharing this story I will help other parents. I hope that others will learn from our experiences, from our mistakes. And more than anything, and with all my heart, I hope no one has to go through what we went through because of one man’s negligence.

Thank you for reading this story.
With love,
Marcela

PS – Why am I writing this today? Because I have been thinking about trust. Because with Nathan sick, I don’t know who to trust. Can you blame me?

He’s doing a tiny bit better today. But he is still having trouble breathing, keeps getting fevers, and is generally just miserable. Hopefully he’ll get better soon! Looking on the bright side – at least we know it’s not the shunt!

The good thing is – he’s not sick enough not to laugh at Cars!