Tuesday, December 29, 2015

A Birthday Story

There once was a little boy who was born into a family with two big brothers, a mommy, and a daddy. When he was born, his parents weren't sure what to expect because he had been diagnosed at 21 weeks gestation with Myelomeningocele (the worst form of Spina Bifida) and Hydrocephalus. At first, it seemed he was more a diagnosis than a baby. His parents were scared as they met with doctors, toured the NICU, and planned for his surgeries he would need.

After his birth he had two major surgeries. One to close the open hole in his back, and one to place a shunt in his brain. Then, his scared parents took him home. 

I love this photo pre-trach. He was such a teeny tiny baby.

After eleven days at home, their lives would be completely turned upside down as their son began to struggle to breathe. He would make loud noises when he breathed and his mother could tell that he had reflux as the projectile vomit flew. On a Monday morning they would take their baby into the emergency department of their local children's hospital not knowing they would spend the next 64 days there. After a few days they heard grim news. Words like, "vocal cord paralysis, apnea, reflux, gastro-jejunal feeding tube, airway issues, and Chiari II surgery" were thrown around. Then, on the fourth day, this precious 6 lb. baby would need the pediatric intensive care unit because his sodium was 108, he was lying limp in his mommy's arms and struggling for every breath. He would need a CPAP mask and oxygen.

For the next several weeks, he would get better for a few days, but then once they took off his c-pap mask, he would turn blue and stop breathing. This would earn him a few more days with the mask only to repeat the process over and over again. He would need warming lights, lasix, oxygen, saline boluses, and then surgery to fix his shunt.

At one point, he was discharged to a regular floor, had his PICC line removed, only to code and end up right back in the PICU.

He would fail tests, and finally one doctor said, "Enough is enough; this baby needs a trach." His parents would be devastated because they knew what this meant. They wouldn't hear his voice or cry for a long time - maybe never again. However, they knew that in order for their baby to live - a trach was his only option. They also learned he has central sleep apnea, which means his brain doesn't tell his body to breathe when he's sleeping, so he would also need a ventilator.

Finally after a few more surgeries to place that trach and a feeding tube, their baby would come home with a ventilator 24/7, a feeding pump 20 hours a day, oxygen and all types of equipment - his little nursery turned into a miniature hospital room. 

Through the years his parents would fight for him to reach every mile stone - through therapy and therapy and more therapy. He didn't always love his therapy!

They would take him to another children's hospital that specialized in airway and digestive disorders to maybe, just maybe he could eat. His mommy would sob the first time she went to Kroger to purchase his first baby food - when he was 16 months old.

When he was 20 months, he pushed his first wheelchair with an 18-pound ventilator on the back.

Then, his parents began to hear his voice. He had a small air leak around his trach, which allowed the boy to push that air over his vocal cords so he could speak. Then around the age of two, he began to say, "mama and baby." 

He got a speech device - a computer so he could push buttons - so it would talk for him. Within a few years, he wouldn't need it.

Over time he also began to eat more and more baby food, then pureed table food, and then dissolvable solids. He had feeding therapy and speech therapy, physical therapy and occupational therapy. There were days his mom was so discouraged she felt she should give up on eating and talking. 

Then, he came to need the feeding pump less and less. He had surgery to stop the reflux. 

He only needed the pump at night. He began to eat real food, and then more real food and then more real food. One day Toby's dreams would come true and his feeding tube would be removed.

His grandpa had taught him to sing and use his big voice around the age of 4. He would sit at the piano while Grandpa played and sang songs like, "Singing I Go", "The B-I-B-L-E" and "Jesus Loves Me." This little boy could only get in a few words - he didn't have enough breath to sing a phrase.
Here's a link to that video (Please watch this - it is amazing to compare this with the video at the end).

When the little boy was five, his shunt would fail and he would have brain surgery to fix his brain so he wouldn't need the shunt anymore. One week later he would have a seizure so severe it would last four to six hours, and he would have to be sedated for his body to stop convulsing. His mommy was afraid he would never sing or speak again. 

She prayed for him to wake up and tell her that he loved her, and she resolved to never take for granted the voice of her sweet boy. A few days later, he would wake up, and though he would have to go through a lot of therapy to even hold his head up and safely eat by mouth again, he did.

Over time, Toby has faced many other challenges, the greatest from ages five to eight has been surgeries on his back to correct scoliosis. He's faced wound vacuums, infections, and extreme amounts of pain from rods coming detached. He's faced fear having to go into the operating room over and over and over. Each time he wakes up with a voice and asks for a drink almost immediately!

Toby began to develop a love for singing and has learned to control his breath to produce the sounds. He began to sing phrases and more and more words, though not always on key because his vocal cords still don't vibrate the way he should...this boy makes a joyful noise unto the Lord! His favorites are praise songs and Toby Mac. It's not unusual to hear him singing at the top of his lungs while raising his hands in praise to God - the God who has healed him from so much through the years. 

His favorite song right now is Undeniable by Toby Mac.
This Christmas he was asked by his children's pastor to sing for the Christmas program - to show how far God had brought him, and what he had done in his life. The little boy with no voice sang a song for Jesus. 

Ephesians 3:20-21
"Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us, to Him be glory in the church by Christ Jesus to all generations, forever and ever. Amen."


  1. What an amazing journey / testimony! Thank you for the updates - they always bring a tear to my eye but a smile to my heart.

  2. Thank you for sharing! I'm praising God along with you all for all that He has done in Toby's life, and for the strong testimony you as a family share with each of us.

  3. Beautiful story of God's grace and Toby's perseverance. You and your husband have received a very special child from God. Happy Birthday Toby!

  4. Since before Toby was born, I have cried tears of concern, rejoiced in the successes and continually lifted all of you in prayer. Toby and your entire family are an inspiration to many. Yes, to God be the glory!!

  5. Oh Carrie ! I'm crying. What a precious soul he is. It's wonderful to see how far he has come.

  6. This is the most beautiful thing I have ever seen! Thank you for sharing your journey Carrie. He is so blessed to have you as such an amazing mom and advocate for him. He is such a beautiful boy. I am sobbing. To God be the glory.