(middle) with his family
my name is Carrie Holt, and my son Toby has Spina Bifida.
When I was 21 weeks pregnant with our third child, my
husband and I went in for my routine ultrasound.
We have two older healthy children and had no reason
to suspect anything was wrong. The ultrasound
technician did the ultrasound, and didn't say a whole
lot and afterwards we met with my Obstetrician.
When she walked in the room, my husband, Bruce said
that he could tell just by the look on her face that
something was not right. She said the shape of
the baby's head didn't look right, it wasn't completely
round and she wanted to send us for a level 2 ultrasound,
which is more in depth and could tell us more.
Later that day, in shock, we saw another technician
and a perinatologist that confirmed that our baby had
hydrocephalus and a birth defect called Spina Bifida.
I remember leaving his office after he told us that
we could choose to terminate. Because of our deep
convictions that life begins at conception, this was
something that wasn't even an option, and we felt offended
that he would even suggest such a notion, but I understood
he felt he had an "obligation" to tell us
this. He also suggested that I have an amniocentesis
to rule out any other genetic abnormalities such as
Trisomy 13 or Trisomy 18. I agreed to that test,
because for me it made sense just so we could be prepared
for anything else that might come.
I remember walking to the car
after hearing such terrible news. Bruce and I
sat and just cried, both of us, grieving over this news.
I remember going home and calling my parents, his parents,
and just beginning to walk through some of those stages
of grief, that I truly believe parents hearing such
news go through.
After this, about a week later,
I had the amniocentesis, and the results confirmed the
diagnosis of Spina Bifida and ruled out any other genetic
abnormalities. It also confirmed we were having
our third boy. However, the diagnosis hung over
my head and I really struggled between having the normal
joy and anticipation of expecting a baby and the fear
over what this diagnosis would bring.
A friend from college put me in touch with her sister's
friend who's daughter was born with Spina Bifida.
She recommended a great book called "Living with
Spina Bifida" and so I began to read up on the
disorder and begin to prepare. This friend, Renee,
also put me in touch with a Spina Bifida Yahoo Group
which has been extremely helpful to me/us along our
journey. I also read the poem called "Welcome
to Holland" by Emily Perl Kingsley, and it was
also very helpful to me.
A short time later we were
put in contact with a program at our local Children's
hospital called a "Fetal Diagnostic Program".
We were also set up with a case worker through the Myelomeningocele
(Spina Bifida) Clinic. This was an excellent program
that allowed us to tour the NICU where our baby would
be transferred after his birth. (I delivered in
one hospital, and he had to go to the children's hospital
to have his first two surgeries). We also met
with several doctors that would take care of him, including
his neurosurgeon who would perform surgery the day he
was born to close the open hole in his back. Throughout
the rest of the pregnancy the perinatologist kept a
close eye on the baby through level 2 ultrasounds and
non-stress tests making sure that he was growing properly,
etc. We scheduled a c-section and our precious
baby boy - Jacob Tobin Holt or Toby (as we call him)
was born Dec. 28th, 2006 weighing in at 5 lbs. 13 oz.
and he was 18 1/2 inches long. I briefly touched
his hand through the isolette before the transport team
took him to the nearby hospital. He had his first
surgery at 5:00 p.m. that day, and 4 days later a VP
shunt was placed to drain the fluid from his brain into
his abdomen. 8 days later, we took him home.
Our plans with Toby didn't
turn out exactly as we had planned. After being
home for 10 days, Toby began to have eating and breathing
difficulties. We took him back to the ER at the
children's hospital and they admitted him suspecting
RSV. After a failed swallow study and a scope
of his vocal cords they realized Toby had vocal cord
paralysis, severe gastro-esophageal reflux, and he was
aspirating all of his food into his lungs. Four
days later his sodium dropped to dangerous levels, and
he was struggling to breathe, so he was admitted to
the Pediatric Intensive Care Unit. They put him
on a CPAP mask to help him breathe, and oxygen.
He would do okay, but when they would try to wean him
back to a nasal canula, he would code (turn blue) and
have to go back on. After several weeks of this
and a shunt replacement surgery because his shunt failed,
they decided a tracheostomy would be necessary.
They placed the trach, but Toby continued to have breathing
problems, so they did a sleep study and found out he
has Central Sleep Apnea. This means his brain
doesn't send the signal to his body to tell him to breathe,
so they decided to put him on a ventilator 24/7.
In the mean time they also surgically placed a feeding
tube into his stomach. March 19th, 2007 - 64 days
after admittance, we took Toby home to his own hospital
nursery - complete with ventilator, suction machine,
feeding pump, and 16 hours a day of nursing care.
This seems to paint a very
bleak picture of Toby and his prognosis. Normally
kids with Spina Bifida don't end up with a trach or
on a ventilator, but it was what was best for Toby.
2 1/2 years later, he is doing great. He can operate
a manual wheelchair, he does eat some pureed food by
mouth, he is learning to take steps with his gait trainer,
and also is learning to talk using a passy-muir valve.
Most recently he is able to be off of his ventilator
for 3 to 6 hours during the day when he's awake, and
it is such freedom for him. We have therapy 4
times a week that includes, speech, occupational, and
physical therapy. It is a busy schedule, but one
he needs so he can continue to grow and develop.
We have a web-site for Toby -www.caringbridge.org/visit/tobyholt
that tells of his entire journey, has photos and links
to videos of his amazing accomplishments.
Looking back would I change
anything? Would I choose not to have had this
baby knowing that life would be so hard and that it
would not be "normal" for us EVER. Absolutely
not, Toby has taught me more about compassion, thankfulness,
God's grace, His mercy and love for us in his short
lifetime than I have ever learned in mine. His
older brothers are learning selflessness and compassion
for those who can't speak for themselves. We never
take one day for granted, knowing that we may not have
Toby with us forever - and the little things like hearing
his voice - yes even his cries and buying baby food
because he can now eat by mouth are things that we cherish.
Toby, wouldn't be Toby without his disability - he is
so precious to us - always has a smile on his face.
We call him "sunshine" because he brings sunshine
to everyone he meets.
to Spina Bifida
-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.