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Thursday, August 4, 2011

An Unbelievable Appointment...

I had a really bad day today. Today I clearly saw (for the umpteenth time) the gap between a surgeon's scientific view of life and the compassion I want and crave in Rebekah's doctors.

I have been fighting with the neurosurgeon and the orthodics company about doing another 'cranial remolding orthosis' (molding helmet) for Rebekah's progressively flattening head ('severe brachycephaly with flattening'). Most places won't make them past a child's 18th month, and apparently neurosurgeons know everything because I was told it would do her no good (even though her growth is delayed and her fontanels are not all closed yet). In fact, I was told that for him to say a helmet would help her head would be as truthful as for his to say he was pregnant.  Yet I have found online parents that have had helmets for their trisomy two year olds.

I also asked the doctor to review Rebekah's MRI from last summer. I never saw a neurologist to actually get a complete review of the results - only got the written results and discussed them briefly with several of her doctors. The neurosurgeon went through an explanation of how the MRI works and what we were looking at. Basically, Rebekah's whole brain is underdeveloped and has abnormalities. For those who like the medical terminology - she has white matter leucomalacia, delayed myelination patterns, and a thin corpus collosum. She has a lot of extra fluid filling in the gaps where there should be more 'substance' and white matter. The white matter is what is needed to create the neuropathways and help the brain to function normally. You loose white matter over time and this decreases brain function.  There are kids born with only a brain stem and no brain who actually can live - they will eat, sleep, cry and maintain the basic of infant instincts/actions all without having a 'brain' or being able to develop. (Wasn't sure why he brought this up...but that is coming soon!)

So what does this mean for Rebekah? (Per the neurosurgeon...) Increased risk of seizure activity getting progressively worse, global developmental delays that we will be able to make some progress on but, because her brain is 'atrophied', we will get to a point where she will 'regress' and no longer develop. There is 'nothing' I can do to help develop neuropathways or encourage development. Or so says the doctor! (So why have studies showed that the first three years of life are critical for encouraging neuropathway development and early intervention is a national program?!)

I have to keep telling myself that she is the same as she was yesterday and this 'diagnosis' doesn't mean anything. God made the brain so complex and amazing that there is no one on this earth that truly understands everything about it. She has survived two extremely life threatening situations all by the grace of God. He can surely continue to develop her despite what this doctor thinks.

Well, the situation kind of went downhill from there (believe it or not) and I started to understand why he was telling me about the 'brain-stem-only' babies. Although he didn't state this is plain words, I quickly realized that he basically views Rebekah as someone that is nothing more than a basic blob of instincts. In fact, I was told that we need to "plan" the "future care" of Rebekah to make sure that we are not doing "to her" instead of doing "for her". (In other words, interventions and procedures at some point are going 'too far'.)  Even if we have people that said they would take her should something happen to us, they really won't want to once they find out everything that this would require and how 'hard' it is to care for a child like Rebekah. We need to draw a line and decide now how far we would go in her care or we will look back one day and ask ourselves, 'how in the world did we get here? We regret our decisions!'

REALLY?!?!  How would you feel if your child's doctor told you this?

Then I get home and I actually read the 'Summary of Today's Visit' print out that I received from the office. The next to the last sentence reads, "She is nonpurposefully verbalizing, no meaningful interaction."  

I am stunned, and mad, and sad. She spent the appointment crying - not because she was nonpurposefully verbalizing!! She is getting FOUR 2 year molars in simultaneously and every morning she is not dealing with this well. I wouldn't be either! She was communicating LOUD and CLEAR to me. And as for meaningful interaction, all you need to do is look at how her eyes brighten when her brother walks into the room, or how she gets a big grin when her nurse comes to take care of her. I have plenty of phtographic proof of her ability to communicate. Just because she cannot write a medical journal article, or even use spoken words, she communicates frustration, tiredness, happiness, fear, and, most importantly, LOVE. This is NOT a brain dead child - this is a gift for us to understand and learn how to love like Jesus loves, how to have compassion like Jesus had compassion...

What happened to the compassion in the medical community that all we have become is a diagnosis or a medical chart?  I fear for my daughter's future in the hands of physicians with this view... Needless to say, we will not be returning to the neurosurgeon's office.


  1. I hope you tell him and the medical board your reasons. "Do no harm" my patookis!!!
    Love to all of you,

  2. I am speechless! Of course she communicates. That's how you know what she wants and needs! Just look in her eyes and take a moment. In one of the two SOFT books, it says straight out that our children take longer to reach developmental milestones, but they DO MEET THEM!!! So, so sorry you had to deal with this. And sorry for him that he can't feel love when there is an angel right in front of him.

  3. Oh Susan! How frustrating!

    It seems so often the medical community is so caught up in the scientific "facts" that they forget, or worse don't even acknowledge, the soul of a person. We are not just a bunch of neurons and white blood cells and gray matter. We--every one of us--is a human being created in the image of God. Fallen, yes. Full of flaws, yes. But human beings with a soul. And our trisomy kids have a soul just as much as the next person! And who can put boundaries on what a soul is capable of?

    And like you said, Rebekah communicates LOVE. This was probably the hugest thing we learned from our Keren; in her love for us and those around her, we learned so much more what God's unconditional love for us is.

    Press on!
    ~Loren, mom to Keren, T18 (9/27/02-1/28/09)

  4. Praying God gives these doctors a brain! Chrissy W

  5. Gosh, Susan. What a day you had. I'm so sorry to hear about it. I hate it when any of our babies run across doctors like that.

    OK, so there was a point in time when I was fascinated with the brain (still am, I just don't have the time anymore) and I'd read up on different things we can do to bring out the brain's potential. Mind you, these books I'm going to share with you aren't necessarily written for developmentally delayed kids like ours and their parents, but there may be a few jewels in them that you could do with Rebekah--you'd just have to take the time to read them, unfortunately. They are called Teaching with the Brain in Mind by Eric Jensen and A Mind at a Time by Mel Levine (on the front of this book it says "America's top learning expert shows how every child can succeed). Like I said, most of what you'll find is for children who have learning disabilities and up, but again, you may find something. For instance, you might read that new exposures are good for the brain and repetition is good. So how does that fit for Rebekah? Give her new toys to play with, let's say, and LOTS of repetition, for example. I'm not saying that these two books are the answer, but I do believe that the brain is a phenomenal organ that does extraordinary things. Rebekah is a phenomenal little girl who also does extraordinary things, and I believe she's quite capable of proving those doctors wrong. . .again and again.
    We love you guys!

  6. There is so much I could say, but nothing sums it up better than this: God doesn't listen to statistics. Rebekah is a child of God.

    I know you won't regret any moment spent with her!

    Jennifer Vanderbeek
    Boise, Idaho
    Mom to Elanor, T18, 11 yrs

  7. How painful that must have been! I am so sorry you had to hear all that. WE know that these children are some of the most joyfilled children on earth! They absolutely do communicate and it is purposeful. Sadly many doctors will never get this because they only have that outdated medical book with the short blurb about T-18 and they aren't spending more than a few minutes with our children to really know what they're like. I know we should pity them, but that makes me mad. (I was once told that I "condemned Lilly to life." so I know how you feel.) The Trisomy 18 life can be hard enough without peoples "opinions." Sigh. Rebekah is a beautiful loving girl with a precious soul and God made her and loves her more than even you can!

  8. A problem I had with little Annette and doctors visits was that she hated them as much as I did. Her whole being completely changed when she went to tch. She actually looked sick even when we were there just for a visit. There were two or three doctors who she liked and they saw her different from their idiot peers. I taught little Annette the same way I taught her brothers. She learned her alphabet, numbers, colors, animals, about 10 - 15 sight words, her name in print and I could prove everything. I recorded it. Given two choices, I asked her for a certain color/number/letter/animal/etc. and she looked toward the one I asked for. I asked her which book she wanted to read, what did she want to wear, how did she want me to fix her hair, what did she want to watch on tv, etc. I gave her as many life experiences as I could. Even though she was on a vent and oxygen, she went swimming, horse-back riding, to the park/playground, the zoo, the museums, the aquarium, bowling, the movies, etc. There are so many events for children with disabilities and they are all free. At first I used to be sad and cry, then I got tired of the same old tired story they were telling. Just give them that mother look. You know the one you use to tell the kids to behave. The ol' fish eye look. It works on doctors, too. Then go find a different doctor.

  9. Dear Susan, I came across your blog and read your last post and I would like to say that I am so ashamed and angry at this medical professional who would make such a statement to say that the verbalizations Rebekah is making are not purposeful! I am a speech language pathologist and educator of the Passy-Muir Speaking Valve. We often hear people question why someone would want to use a speaking valve on a child who doesn't "talk". I have always advocated for even the youngest and most developmentally delayed children who do not speak in words an opportunity to use the Passy-Muir Valve to be able to use their "voice" to communicate with the world. All mothers learn to differentiate intent even in the different tones and pitches of crying. All vocalization is communication!!! Every facial expression and body gesture is communication. Looking at the pictures on your site, I can see that Rebekah uses the Passy-Muir Valve and I am so happy to see that she is using it and that it may help her communicate with you. I personally wouldn't mind setting this physician straight myself!
    Julie Kobak, MA, CCC-SLP, Vice President of Clinical Education, Passy-Muir, Inc.

  10. I'm sorry you had to go through this and so disappointed that some doctors forget that not only are they supposed to "do no harm", they are also supposed to help! It's a simple thing to be kind. And would be worth so much more than his inaccurate assessment. Our t18 miracles definitely communicate and interact with us. We know. Hugs to you.

    Jenny C. (Julia's mom)

  11. Unfortunately, we have heard similar things that neurologist has said. Just recently, an ortho dr told me Kayli "is in a vegetative state"! Just after he left the room, she kicked towards him! LOL I tell my daughter she does not have to prove anything to anyone, and then I ask God for guidance while I seek for a specialist who is more qualified to care for my daughter. We haven't had much help with her neurologist that we added to Kayli's team specifically for the brain loss after the 32 minute cardiac arrest. He wouldn't even check her med levels, so Kayli's hand picked Pediatrician checks them even though he is not the best one to manage the meds! Last week, an Epilepsy Advocates program through Early Intervention not only set Kayli up for a brain MRI (which the neurologist refused to do...Kayli would never improve), they set up an EEG, and found and set up an appt with a top knotch Neurologist whom Kayli met Monday! He is amazing!!! Big changes and a ton of support from this new handpicked neurologist! Can you look into your Early Intervention program and see if they have or know of Epilepsy Advocating Programs? If not, maybe you can google Epilepsy advocates in your area? They will probably know who is capable and willing to care for Rebekah. <3

  12. I wish you lived near us in Houston. Our neurosurgeon is amazing...never even questions anything about T18. He thinks Annabel is amazing. She has much of the same thing you mentioned concening the brain. I feel sorry for your doctor. Our children purposely communicate everyday and he is the one missing out due to him not purposefully taking the time to understand. Poor souL!
    All this to say I watched your Rebekah many times at SOFT Conference. You were in another work shop and your hubby and cute little son had her on a mat on the floor with toys hanging above her. I say this not to make you feel good, I say it out of honesty. I have always thought Annabel to be a high functioning, maybe I am just prejudice. But I found myself thing wow, look what Rebekah can do as far as rolling on her sides or over and playing and laughing with your little boy. She grasp all those toy with purpose. Until recently Annabel who is 6 years didn't even want to hold anything! Let pray for this neurosurgeon and consider ourselves blessed that we understand this language even though silently! Thank you for sharing with us your visit. I am so sorry you had to endure this because of someone so uncaring!

  13. I keep telling myself that she is the same, because she was yesterday and this "diagnosis" does not mean anything. God made the brain is so complex and surprising is that no one on this planet, really understand it all.

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