Toby (middle) with his family

 

Hello, 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.

Thank you,
Carrie Holt

   

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-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.