Haven's Story
Although I wish I wasn’t in this situation having to tell you my Daughter’s story, I’ve always been one
who believes that the difficult experiences and times in one's life are meant to be told. If sharing this
story can impact just one other life, then to me it is worth telling.
Haven is our third child - Having two boys before Haven was born, I “thought” I was well prepared for
my third. This girl was born ready to be the CEO of a company before she could even say her first word.
You always hear the stories of how brothers protect their sisters, and my boys will do that 110%.
However, I am not sure they will ever be allowed to have a girlfriend that Haven will not scare away.
Haven is your normal toddler - Although she’s never liked to nap, nothing ever concerned me to the
point that I thought something was seriously wrong. All of that changed in mid-April with something as
simple as her stubbing her toe. For the next week to come we thought she was just “babying” that
foot/toe as she was walking, but even though the toe was starting to heal we noticed she was now
walking completely differently.
The fear really started to set in when I realized the way she was walking was all too familiar to me. My
Dad was involved in a motorcycle accident where he suffered severe injuries to his knee that resulted in
him losing control of his foot. He had to wear a brace so his foot would be lifted the rest of his life. Given
that experience, I became convinced that she had injured her knee, and her peripheral nerve was
damaged, the nerve that controls your foot.
I booked an appointment with a well-known orthopedic doctor at Shriners Hospital. They visually
watched her walk, did a complete work up on x-rays, and when all came back clear they told me to come
back within 4-6 weeks if her drop foot did not get better. (At this point, they continued to reference her
stubbed toe as to why she is walking this way due to it not only being bruised but cut as well.
I remember leaving that appointment, relieved, because the x-rays came back clear, and the medical
team just wanted us to follow up. But deep down in my heart my motherly instincts were setting in, and
I knew this wasn’t the full reason she was walking differently . . . And that feeling, I just could not ignore.
A few days later, her toe continued to heal, however her drop foot got worse. I was 100% convinced at
this time that something was not right within her knee. So, I scheduled an appointment with her
pediatrician, who did not seem concerned either. She also referenced the severity of the stubbed toe
and told me to “keep an eye on it for any signs of infection”. However, she did refer us to an orthopedic
doctor within Texas Children’s to be seen.
I immediately left the clinic and called the orthopedic doctor to schedule the appointment. The clinic
was able to get us in the following week. However, this is when I started to think “What if this is an
infection?” I would never truly know unless we have blood work was performed so I told my husband
we need to take her in immediately.
My middle child was involved in a dirt bike accident about a month before this all started, and due to
the great care he received we decided to take her to the same hospital, Memorial Hermann. When we
got to the urgent care there was a PA on staff that I expressed all my concerns to. He performed an
exam and then said “Mom, Dad let me call the doctor on call, I’d like to consult with him before saying
anything.”
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When the PA walked back into the room, he told us “You all need to take her downtown to Texas
Children’s Hospital. There is something going on that I cannot diagnosis here.” I was finally feeling
reassured that my intuition was right, and someone was finally taking my concerns seriously.
From here we took her straight to Texas Children’s Hospital ER, as they are known for being top in the
world for their pediatric care. After nearly nine hours at TCH, they sent us home and said to follow up
with our pediatrician. They performed every test I could think of to ask, full panel blood, ultrasound of
knee, x-rays of the whole body. Everything came back normal. Now, I am at a loss… What do I do now?
We had an orthopedic appointment scheduled where I thought to myself, they will be able to determine
what is wrong. This orthopedic was straight forward, reminding me a lot of myself in some sense. She
wanted to once again, do a full work up of x-rays, which we did. And once again, everything came back
clear. It was in that moment that she looked at me and said “Mom, I am putting in orders for an MRI of
her spine.” My response was “No ma'am, you can order the MRI of the spine, but you are going to
include the lower left extremity as well.” She hesitated to respond, respectfully so, but she included the
lower left extremity and spine, and we went on our way.
Then came May 22nd, a day that will always stay in my head. It’s a Wednesday, my husband takes off
work and we have to drive sixty plus miles away for the MRI. For those that don’t live in Houston, 60
miles away means you’ll be traveling for around two hours given traffic isn’t terrible. We get to Katy TCH
and check in, go over sedation and such forth and my husband walks back with Haven until she is asleep.
* You can hand me the most difficult cards in life, and I will conquer them, I didn’t find myself to be
weak until I had to see my child go through.
As my husband and I are sitting in the waiting room, waiting for an update. I am not a very patient person; I
am walking back and forth to the coffee shop at this point. As I am waiting in line to get a coffee, my
husband texts me and says, “they just came out and said they are going to include her brain in this MRI.”
God works in mysterious ways, because had I been up there when they came out to say that I would
have lost it and had multiple questions.
This is why God allows us to marry the opposites of ourselves, my husband kindly responds and says
“ok”. I resort back to my mom gut at this point, “Meghan, there is no reason that they’d suddenly order
a brain scan if the spinal scan did not show something concerning that they needed to go further up.”
I call my mom, aunts and my mother-in-law and I sit outside that hospital and pray. When I say the pain
overtook my body, it overtook me, because I just knew something was not right. Haven finally gets out
of her MRI, and we are waiting for her to wake up from anesthesia. After around an hour, we are able to
leave the hospital to go home.
Anyone who knows medical, knows results are uploaded to MyChart before the doctor actually
discusses the results with you. We stopped at our local grocery store, Haven was still asleep at this time,
and I remember getting a ding to a new email of “New Test Results for Haven” in my chart. I was nearly
ready to check out my groceries, but something just told me to wait until I got to the truck to open the
email.
I opened the results as my husband got out to load the groceries, I fell to my knees. There was only one
other time in my life that I felt that way and that was finding out my dad had passed away.
How? How can this be happening, or even be her diagnosis? She looks just fine, all that is wrong is a
drop foot. There is no way… my baby girl has all this going on.
If you’ve made it this far with the story, first off, thank you! After Haven’s results from her MRI scans,
we were obviously referred to a neurosurgeon within TCH. Who recommended surgery nearly
immediately due to the severity of Haven’s scans. (Mainly her syrinx is covering her entire spinal cord.)
Being new to this all, I wasn’t aware of the difference between procedures and the way to perform and
the different grafts that are used. Our first neurosurgeon at TCH was amazing, he played ring around the
rosy with us and just stated in a blank form. “Your daughter has a massive syrinx and needs surgery
sooner than later.”
Leaving this appointment, I felt comfortable with this neurosurgeon however after the initial shock is
over you start to do further research. I joined a Facebook group that is called “Conquer Pediatric Chiari”
and to be honest, probably ten other Facebook groups. To where, I came across a mom’s post of a
doctor a Children’s Memorial right here in Houston who recommended a specific neurosurgeon that
operated the same surgery on this woman’s son with success.
I schedule a second opinion with this neurosurgeon, had all our scans sent over and test results,
obviously hoping to walk into this appointment and this neurosurgeon tell me “Your daughter’s case is
not that severe, we can monitor this situation.” Wishful thinking, I am aware, and it obviously did not
happen. This neurosurgeon, once again, very nice, but said to me, “your daughter needs this surgery,
and she needed it a month ago after these scans were discovered”. Discouraged, I am so discouraged at
this point.
I am at this point telling myself, you need to make a decision, and given what you’ve been told by two
different neurosurgeons, you need to make this decision Fastly. Between these two appointments, one
thing stood out to me that the neurosurgeons told me differently. One had stated they would be using
“pig skin” for the duraplasty and the other one said they would be using Haven’s own tissue as it is a
better success rate at recovery and the body not rejecting a foreign substance.
Once again, this brings me down a completely different route, I am new to this all. I have no clue what is
best, who do I trust, what do I do. This is my daughter’s brain and spinal cord we are speaking of, I can’t
just base my decision on two different opinions from two different neurosurgeons who both don’t
specialize in this however are fully equipped to perform the surgery. It all just felt so unsettling to me.
Which is when I end up finding Dr. Greenfield based in Weill Cornell in New York City. I remember it like
yesterday, reading his bio (reminding you at this point I had researched neurosurgeons at Mayo in
Minnesota, Duke in North Carolina and a doctor in Washington.) None stood out to me like Dr.
Greenfield did, he specialized in this. Created a whole Chiari Care Team, it was a sense of RELIEF. I refer
it to when you meet your soul mate, when you know you just know. That’s exactly how my mom heart
felt, and I hadn’t even talked to him at this point. It was a process to be able to get an appointment, but
after I had sent in all the paperwork, had Haven’s scans sent to them, and insurance verified. He was on
the phone with me within a week. ** I was excited I was able to get in with him so soon, however I
believe it happened so quickly because of how severe Haven’s syrinx and Chiari is”.
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Fast forward, Dr. Greenfield wants to have Haven to be seen by an ophthalmologist to have her eyes
test to make sure she does not have pressure built up in the brain. Thank the Good Lord above, this test
comes back clear. However, within the following weeks, Haven symptoms are getting worse.
She refers to it as “mosquitos and ants” biting her, however its nerve pain throughout her body,
specifically her back and legs. She started hitting her head in pain(headaches), rubbing her eyes and
crying (I am not 100% positive, but I believe this is also coming from a headache), vertigo, back is always
hot and hands/feet cold and the most recent that made me immediately schedule surgery, she started
gagging and vomiting. Sleep apnea and trouble swallowing are symptoms from this diagnosis.
Haven’s drop foot is not a common symptom for her diagnosis. In fact, it’s very rare that it would even
happen. Left untreated, syrinx can cause complete paralysis of one and the longer surgery is held off,
the less chance that she will gain control over her left foot again.
I knew as the symptoms continued to get worse, that I had to put my fears aside, and do what is best for
our Haven. I prayed for many nights for God to take this away from my daughter, however, he answered
our prayers by allowing me to find the best doctor to care for her. God doesn’t always answer our
prayers in the way we ask him, he answers them in the way he has planned. We ask you all to please
pray for Haven, her medical team, and our family during this time!