Closure & Warning

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

http://www.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://www.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!

Comments

  1. my situation is different, but so much the same. the feelings you describe, the crying baby for the first four months. the neglegence of doctors. the law suit not being one they would persue because of the initial damage being done in the beginning, etc, etc, etc…

    lack of trust in doctors, TOTALLY, I feel and greive with you on so many levels.

    thank you for sharing this post.

    ps. my daughter laughs the exact same way…its crazy how much alike they sound. SO CUTE

    Stephanie

  2. http://Laura%20Anderson says

    There is something you can do to warn others in your area. send your story to your local newspaper and have them put it on the opinion page. thats what I did and our negligent doctor took an early retirment and will no longer be damageing any other child.

  3. http://Susan%20Durnell says

    Hi Marcela.

    Please accept my virtual hug. I wish I could do more. Your pain and fury are still so raw. Our stories are very different, but I recognize the naked helplessness you are feeling. I hope that by this post and whatever other mechanism (the newspaper story is a good idea) you can find to warn and help others, there comes some closure for you, so you will not keep torturing yourself for the mistakes of others. I also hope you are getting some outside help to handle your grief.

    It is agonizing to realize that you will never know whether Nathan could have had a different outcome with another doctor. I think you make an excellent point to parents in all kinds of medical situations that they should fight hard and trust instincts, and above all, get a second opinion. Developing trust will be most difficult for you, but I am hoping with time you can come to have faith in Nathan’s medical support system.

    Best of luck to you and your beautiful son as you grieve and heal, and help him grow into the wonderful person that he is becoming daily.

    Susan, mom of Beth, 20, lobar HPE

  4. http://Gala says

    Dear Marcela,

    I’m speechless. Your story is like going through hell. I feel the pain and heartache just reading it.

    If I could I would share your pain with you so you don’t have to carry so much.

    Hugs,
    Gala

  5. All I can say my best friend is I love you and know what you mean in some ways. I hate that it did not work out and I will keep this in mind for sure. You are so brave and strong I am glad to know you are apart of our lives.

  6. I’m so sorry to hear your very sad story. I too have a very special needs child. My son had a drowning accident when he was 17 months old, he suffered a TBI. I too find it hard to trust Dr.’s at times, just last week our pulmonologist was not disturbed that Luke’s oxygen levels were in the low 90’s, any other “normal” child and he would of been freaking out. My only comfort in life in my faith in God, without Him I don’t know where I would be today.

    Suzi Searles

  7. I too have been in your shoes! I have learned some doctors graduate from the top of the list and some from the bottom. They poop just like we do. We as mother’s know our child best. When we say something is not right! Something is not right! Bless you for being an advocate for him. Everyone must speak up on behalf of there child. Blessings to you

  8. Oh, Marcela. I cannot believe what you have been through. I hope that writing it all down really has been cathartic for you. My husband was the one who wanted to sue our doctor, when Max had a stroke at birth. Strangely, I wasn’t that determined to. I just wanted to move on and focus on doing whatever we could for Max.

    I know you are doing that, and more, for Nathan.

    FYI, cars is Max’s favorite movie, too. Although his new favorite is Wall-E. Which will we now be forced to watch 200 times. At least.

    A big hug to you.

  9. http://Debi says

    I just read your post for the first time (I’m from the SCE support group). My son, Ben, was born perfectly normal and at 6 weeks old was violently shaken, thrown against a wall and left for 10 hours before receiving any medical treatment. He suffered a massive non-accidental TBI resulting in hydrocephalus w/ a shunt (we just had our 37, 38, 39 and 40th revision over Christmas), CP, bilateral retinal detachment resulting in blindness, severe cognitive and physical delays. He does not walk, talk, or hold his own bottle (he could if he wanted to 🙂 Ben is now 5 1/2 years old. We took him home from the hospital after his initial injury with hospice as a foster child and officially adopted him in April of 2005 just before he turned 2; although he had our hearts from the moment we met him 🙂
    The perp who did this to him was found guilty of 1st degree child abuse and is serving a 10-15 yr. prison sentence.
    I often think that “someone” should pay for what was taken from my precious son. She’ll get out when Ben is between 12-17 yrs old. He’s most likely still be in a wheel chair, in a special school, blind and unable to live the life he was supposed to live. She can leave prison with education and job skills and could go on to have a child of her own if she wanted. Shouldn’t she have to pay something ???? She has nothing and we want nothing to do with her; but it seems Ben deserves something. The cost of 40 + brain surgeries, eye surgeries, orthodics, ortho surgeries, equipment, therapy, meds etc etc etc are astronomical. Yet, she pays NOTHING!! I choose to focus on Ben. I choose to accept the precious gift God gave to our family through Ben. He has brought so much love and grace to us all and although I’d do anything to take his pain and suffering away; we are better for having Ben in our lives. Ben gives us a glimpse of God and heaven and unconditional love and acceptance. For that I am truly thankful!
    God Bless You and Nathan!

  10. They may not can prove his deficiencies are from the negligence, but they can’t prove IT’S NOT from negligence either. We had a case like this as well and at least got a settlement since there was so much gray area.

  11. http://Summer%20Robinson says

    Marcela,

    I am sitting here crying while reading yor story. It’s as if someone typed the last 2 years of my families lives, and then put Nathan’s pictures in and your name. It’s amazing how exact our stories are. I had identical twin girls…one who has Dandy Walker Malformation and Hydrocephalus. The other twin is completely healthy. We endured exactly the same as your family, with the shunts, the docotrs, the hospitilazation, and so on.
    I am so sorry that this happened to you too!
    We are also working our hardest to ensure that this doesn’t happen to other families, as I’m sure you are too!
    You and your family will be in our prayers!
    Here is a link to a pic of me and my girls 🙂

    Summer

    http://i63.photobucket.com/albums/h155/Summerrobinson/050.jpg

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