Growth Rods: the Right Decision for Zoe
By Lorraine Grisez
Our daughter, Zoe, was diagnosed with SMA type II when she was fourteen months
old. Zoe is a very middle of the road type II. She never crawled, stood or walked but
she can sit up on her own when placed into a sitting position. Zoe has gained, lost, and
regained abilities with her growth spurts. In the summer of 2003, around two years of
age, Zoe grew about four inches. It seemed as if overnight her back took a turn for the
worse and went from absolutely no curve to a 30-degree curve. In hopes of slowing
down the scoliosis, we got the very uncomfortable TLSO, or turtle shell as Zoe calls
it. It was a fight every day with her to get it on, and I admit that on some days I chose
her comfort over the TLSO. By December of 2003, Zoe could not sit up by herself
without the turtle shell on. Over the course of 2004 Zoe continued to grow and her
scoliosis continued to worsen. She was no longer able to sit up in the bathtub. Her
TLSO would creep up on her and she would sit uncomfortably at preschool until she
came home to take it off for a break. And worse yet, the TLSO was beginning to
create horrible pressure sores. We put off the inevitable discussion of surgery until
winter was over.
In March of 2005 we weighed in on all our options as we learned her curve was then
at 56 degrees. We could have opted for a full blown fusion for our three year old who
was 33 inches long and weighed 27 pounds. To tell the truth, that really wasn’t a
feasible option. We could look into driving from Colorado to Salt Lake City to
explore the titanium rib – a fairly new surgery at the time and one in which we had not
heard of an SMA patient receiving. We could have growth rods inserted along Zoe’s
spine and in doing so agree to subsequent surgeries every six to nine months until she
has grown enough to do a full blown fusion. Or we could not do anything at all and let
the scoliosis continue to progress, until our only option would be a fusion on a very
tiny child. We opted for the growth rods, hoping to buy Zoe the time to grow as much
as possible before doing a spinal fusion.
On April 20, 2005 we kissed our sweet little girl goodbye as the anesthesia took over
and she drifted off to sleep on the operating table. I was horrified. What was I
thinking? At that moment I realized I would have to go through this every six to nine
months. I have never been so scared in my entire life. I felt as if I would not be able to
take a single step away from her, but I managed to make it to the waiting room.
Four hours later, the surgeon emerged to tell us the surgery was a great success. He
fused two vertebrae at the top and two at the bottom to connect the “hooks” to which
the rods were connected. He explained that he was very conservative in correction
because there was a chance that the hooks could pop out of place. He said she should
be awake within an hour and extubated within the hour after that. Not even twenty
minutes later, we were paged. Zoe was awake, extubated, and crying for us. She had
come out of the surgery amazingly well.
We spent eight nights in the hospital. At first, Zoe was fine. She sat up when they
wanted her to, she was eating, and she even got in her power chair and zoomed around
the hallways. However, she did have a slight cough. The night before we were to be
discharged, her cough took a turn for the worse. We increased respiratory treatments
from every four hours to every two – coughing with the cough assist and suctioning.
Zoe was introduced to bi-pap for the first time. Fluid had built up in her lower right
lung. This was one of the risks we knew we were getting into. But seeing my child
like this, a child who had never been hospitalized before, was an incredible burden on
my heart. Within two more days, we were allowed to go home, bi-pap and oxygen in
tow. Zoe spent one night on bi-pap at home and I am convinced that all she really
needed was a good night’s sleep with no nurses poking and prodding her throughout
the night.
We noticed immediately the change in Zoe. She was sent home with a new TLSO to
protect her, but she doesn’t wear it daily – only in her stander or during physical
therapy. We decided to do her first lengthening in September to avoid the cold and flu
season, which seems to have hit early this year. On September 20th, we kissed her
good-bye once again on the operating table. Amazingly, just over an hour later she
was out of surgery, on room air, and asking to go home. We did go home – the same
day! Within two days, Zoe was off pain medicine and just as spunky as ever.
Today, Zoe’s curve is less than 20 degrees and we expect it to get better with her next
lengthening. She sits up wonderfully and her daily oxygen level is on average 98. Zoe
is enjoying wearing dresses and outfits without her bulky turtle shell. She is now
almost 40 inches long due to her surgeries.
Our children are very different, in strengths and weaknesses. I cannot say what is right
for Zoe is right for every child. I can say that this was the right decision for Zoe at the
time it was made. We are very pleased to see Zoe doing so well. She’s an amazingly
resilient little girl, full of spirit that I cannot even begin to describe. I have always and
will always continue to do everything in my power to make Zoe’s life easier and to
maintain her health. I firmly believe that these surgeries do both for her and I know
that no matter how difficult it is for me to see her on that operating table, it is truly in
her best interest. As of today, the benefits of Zoe’s growth rod surgeries far outweigh
the risks.