First, spina bifida is not the most devastating diagnosis that can be had. We didn’t realize this at first. I can’t imagine that anyone ever gets pregnant HOPING that their child will have a disability or a handicap that will impact their entire life; however in the days and hours that followed our original diagnosis, this heavy, burdensome monster of a lot in life became something far less devastating. True, my child is not here yet and I have no idea what she will be like when she does get here, but the overall prognosis of spina bifida is not the most devastating thing that a person can hear. Our lives will probably be more complicated than most- they might involve things like leg braces and urologists and physical therapy and way, way more dr’s appointments than I care to imagine at this point in my life, but I fully expect that our lives will also involve innumerable hugs and kisses, another spunky Cox child that is both sweet and stubborn, and I am PRAYING for some chubby cheeks for this sweet baby- on both ends J. We lived in a place for a number of hours before we received clear answers where we didn’t even know if our baby would be even born, so by comparison this is a huge gift.
The second thing that you all
need to know is that God has sovereignty over PBS show scheduling. Yes, He does.
The day after we learned about our little girl, Matthew and I both
stayed home from work with Gavin and Harper.
There were a lot of people to call and, even at this fresh, early stage,
a lot of decisions that had to be made.
I came out of our bedroom after a phone call to see Matthew, Gavin, and
Harper all sitting on the couch watching “Daniel Tiger’s Neighborhood”- a
favorite in our house. Tears were streaming down
Matthew’s face. I sat down with them to
see that the episode that was on showed a little girl coming to play with the
regular Daniel Tiger crew, only she had braces on her legs and wore crutches on
her wrists.
The theme for the days show
was “In some ways we are different, but in so many ways, we are the same”. (True fans of the show just sang that line
rather than reading it). The end of the
episode showed two real life brothers playing in the park; one of them could
walk normally, the other had little braces on his legs. His mom had to lift him onto the swing, but
he laughed and played alongside his brother.
Even at that fresh and early stage, with our news being less than 24
hours old, seeing that happy little boy on our television screen gave us both a
hope, a picture of a life of challenges, yet happiness that might resemble
ours.
There are lots of details in this
next chapter of our story, some of which are probably more boring than others,
but the biggest directional detail was that Matthew and I had to decide if we
wanted and would be candidates for a fairly new in-utero surgery for our
baby. In this surgery they would actually
go inside of me and perform surgery on our baby to close her back. Still pregnant. Crazy.
Even now (spoiler alert- we did it), it is crazy to think that I’m 31
weeks pregnant, but our baby is recovering from a surgery that happened 7 weeks
ago. A doctor has touched my baby…technically
my baby has been delivered and then put back inside of me. Pretty miraculously crazy.
We knew from our first
appointment that this was potentially an option for us, but there were several obstacles. First, only 10-15 hospitals in the country even
perform this surgery. While it’s statistically
proven as a “standard of care”, it’s still fairly controversial because this is
the first and only intra-uterine surgery currently done where the alternative for
the baby is not fatal. Most babies that undergo
intra-uterine surgery for other diagnoses have a condition that they will
likely die from if intervention does not occur; however in the case of spina
bifida, it is intended only to improve the quality of life after the baby is
born and reduce risks of common spina bifida complications. While this has proven successful, it still is
accepting a huge amount of risk- fetal death, premature birth, risks to the
mother that wouldn’t exist in a normal pregnancy. To date there have only been less than 600
fetal surgeries related to spina bifida in the entire world.
Another obstacle specific to us
was that Poppy had two holes in her heart.
For a baby to be a candidate for the surgery, doctors do not want the
baby to have any other “anomaly” that might further complicate the
surgery. We were told that the two holes
in her heart weren’t serious under normal conditions, but dr’s would be
hesitant to accept a baby with a condition like this. One of the very first things that we asked people
to pray for was not that the dr’s would be open to operating on our baby with
two holes in her heart, but that God would completely close the two holes so
that it wasn’t even a factor for them to consider.
Matthew and I had to quickly
decide if we wanted to be evaluated by the Texas Memorial Hermann Children’s
hospital in Houston for the surgery, the center that our Tulsa doctor had the
closest connection with. We set up a
3-day evaluation trip for the following week.
The surgery had to be completed by 26 weeks gestation and at the time I
was 21 weeks pregnant, so we knew that we only had 5 weeks to explore all of
the surgery’s options, be accepted, and have the surgery done; otherwise we would
lose our window of time. In our initial
conversations with Houston, things sounded positive, but as they reiterated the
“red flags” of our case, Matthew and I felt compelled to have a 2nd
opinion set up immediately. Matthew, who
had researched the surgery more broadly (I, to this day, haven’t Googled a
single thing related to spina bifida) said that Vanderbilt in Nashville was one
of the leaders in developing and researching this specific surgery.
We began to explore setting up a
second opinion at Vanderbilt, hoping that if perhaps Houston said no, Vanderbilt
might be more “liberal” with their criteria since they were more
experienced. Our Tulsa doctor
facilitated this as well and the second to last week in January took Matthew
and I on a whirl wind medical trip to Houston and Nashville.
Our first stop in Houston was a
day long evaluation of Poppy and I involving multiple ultrasounds, a fetal
echocardiogram and a fetal MRI (which- heads up- means as Poppy’s mom, I had to
go too!) The amount of nerves and fears
and fragility that we walked into that clinic with on January 19th was
overwhelming. Any mother and father that
have sat in a room where a doctor gave life changing news can likely attest to
this new feeling that is now present in any other appointment, ultrasound, call
from a dr that follows. I’m still
waiting for it to go away. It’s like your innocence of belief in normal
outcomes has been lost and any realm of possibilities of badness is suddenly
open to you. Where ultrasounds used to
bring a sense of excitement to see and experience our baby, now I waited to see
what else could be wrong. What more
could they find out?
However, God showed us a real
miracle on January 19th. When
the cardiologist read Poppy’s echocardiogram, there was no evidence of holes in
her heart. She couldn’t see them. Holes that were confirmed by two ultrasounds
in Tulsa only 13 days previously were now gone.
I know our God is a God who hears.
I suppose the cynic in me could say “well if He could heal her heart,
why couldn’t He just close up her spine.”
But rather, I believe that God gave us this miracle to let us know that
we weren’t going through all of this on accident. He didn’t forget about Poppy. He hadn’t
overlooked her on Week 4 of her fetal development when her little spine was
closing. He made her fearfully and
wonderfully. He had His hand on her
life, on her spine, on her heart. The
Cardiologist in Nashville confirmed the same thing- her heart looked perfect.
Super LONG story short- we were
denied surgery in Houston. Her case wasn’t bad enough to assume all of the
associated risks, they felt. We left
Thursday evening for Nashville believing wholeheartedly that they’d say the
same thing; however Friday after a similar evaluation process at Vanderbilt we
were told, much to our surprise, that they thought Poppy and I were good
candidates for fetal surgery.
One paragraph could not even hold
the agony of making the decision to accept surgery for Poppy. Looking back, I can see that God answered
every prayer, led us completely on our own to pursue opportunities at
Vanderbilt, God had even closed the holes in her heart to make her a candidate
for surgery; however in those next few days of deciding whether or not to
follow through with the surgery, all Matthew and I felt was the weight of the outcomes
of this surgery falling on us. There was
a sense of peace knowing that God had created her the way she was- after some wrestling,
I had come to realize that Matthew and I hadn’t done something to cause her
spina bifida; however if we chose to have the surgery and something bad were to
happen, WE were the ones that made that choice. There was also the choice to accept giving up
the rest of my pregnancy to bed rest, not being able to lift, bathe, play with
my children, see my friends, go anywhere, leave my job. I also knew that I’d have to stay in
Nashville for 3 weeks after the surgery.
I cried and cried at the thought of not seeing my children for 3 whole
weeks. And what if Poppy couldn’t
sustain the surgery? What if my body
couldn’t sustain the surgery or the recovery?
What if we actually made things worse with the myriad of negative possibilities
that we would open ourselves up to? How
could two kids be expected to make that decision for their own child? I secretly hoped Vanderbilt would call and decline
the surgery and take the opportunity off of the table.
Tuesday morning- 24 hours before
we had to give our final decision to Vanderbilt about whether we’d have surgery
6 days later- God led me to these verses:
“But you, O Lord, are a shield around me.
You’re my glory and the Lifter of my head…
I lie down and sleep and awake again, because the Lord
sustains me.”
Psalm 3:3 & 5
This surgery would close our
daughter’s back to release the pressure that was pulling down her back and her
spine and brain. One of the intended
outcomes was that it would release the back of her brain from being pulled down
and flattened, to lift that part of her head back up into its original shape
and place. God can do that. And God could also sustain Poppy and I while
we slept under the hand of many doctors and allow us to awake again.
My last thought on this chapter
of our story was that this was the baby that we always loved. We learned that the spine forms in the 4th
week of pregnancy. I found out that Poppy was coming into our lives during that
4th week. Likely the day that
I saw two blue life-changing lines, her little spine was already in place. Maybe not, I don’t know, but this was always the Baby #3 that God had
for the Cox family.
I remember the night I felt her move for the first time. I had just put the kids to bed and Matthew was at the fire station- it was Christmas time. I felt the tiny little flutter of a life inside. I remember the overwhelming feeling of gratitude, of “if I could just capture this moment and remember it forever”. You can’t take a picture of what that feels like, so I took a picture so that I would remember that moment. Just a moment of maternal bliss over the baby God had given us.
And that baby was Poppy. This Poppy. It always has been. Not a Poppy made differently or “normally”, but this very little girl made exactly how she is.
Photo credit to my sis, Katie Goodson, for awesome pics 2 and 3.
Thank you for doing a crash maternity pic session with 12 hours notice. Love you!
