Toby Clum

Toby’s Story

“He smiles and laughs, and brings joy to our family.”

Toby Clum, 07/24/2016, Trisomy 18, Glendora, CA

At my 12-week ultrasound, we discover that the Toby has cysts in the choroid plexus and possibly a cleft palate. Because of the results, our NP recommends the Panorama blood test as a genetic screening, and I agree to it.

Five days later, I receive the ominous phone call. I was sitting at the music studio, waiting for my daughter to finish her piano lesson. It was a call from our nurse practitioner, and she informed me that our baby was diagnosed with Trisomy 18, and that most babies only live a few hours to a few weeks. In Trisomy 18, there are three copies of Chromosome 18 instead of two. She told me that our baby had a disease that was “incompatible with life”. Upon hearing the words, I was overwhelmed with emotion and already sobbing. Before she hung up, restraining my crying, I asked her if the baby is a boy or a girl. “It’s a boy!” The thought of losing our baby is unbearable, especially after wanting a son after five daughters.

We were very blessed with prayerful friends who have lifted us up in prayer.

We are Catholic, so every child is a gift from God. Every child is a blessing. A child is not a burden or an inconvenience. My husband and I have 7 children, plus 4 in heaven lost through miscarriage.

Every day, I prayed that God would heal our baby, but I also prayed for God’s will. It was a very difficult prayer. There were several times that I had to leave Mass because I would pray intensely pray that God would heal our baby, and the flood of emotion would over take me, and I would leave in tears. I wondered if my prayer was different for God’s will. I knew that God could heal my son, but I doubted if he wanted to heal my son. I doubted if my faith was strong enough.

Our baby was born on July 24, 2016. The medical team assembled as soon as I arrived at the hospital. It consisted of the on-call obstetrician, the NICU doctor, and a team of birth and NICU nurses and respiratory therapists. As soon as he came out he began to cry. It brought me so much joy to hear his little voice. The doctor made his observations and brief assessment of his physical characteristics. The respiratory therapists all carefully observed his They handed Toby to me for such a brief moment to take a picture, and then he was rushed off to the NICU with James. I was left alone to recover and wonder if I would ever see my baby alive again, yet I knew that I would be reunited with him soon.

The moment I held him for the first time, I just wanted to cry. He was connected to a NCPAPP, OG-tube (oral-gastric), IVs, and probes to monitor his heart rate, breathing, body temperature and oxygen levels. Yet I was grateful that he was alive. He was in stable condition.

After three weeks, Toby had surgery for a feeding tube, he had gained a whole pound, and he was breathing on his own, so he was ready to go home.

Toby is now 5 1/2 months old and is doing incredibly well. He is growing, thriving and reaching milestones. He smiles and laughs, and brings joy to our family. He has very minimal health concerns. He is not on oxygen, and breaths on his own. He has a feeding tube, but he has not had any surgeries.

If you are pregnant with a baby with trisomy 18, have hope. Trisomy 18 is not a “incompatible with life.”

On Christmas Eve, I will be five months old,
a bundle of joy, love, and cuteness untold
I’m a reminder that God answers prayers.
If only my doctor’s could see me– naysayers.

They thought I’d be blind, but now I see
They thought I’d be deaf, but now I hear.
I know my family and they love me.
I’m everything I ought to be.

I smile and yawn, stretch and cuddle
With all of my sisters, I love to snuggle
When you talk to me, I talk back to you
With goo-goo and ga-ga, and a sometimes A-choo!

They didn’t think I’d survive a single day
But my mom instead would turn and pray.
Now I’m here, perfect in every way.
My name is Toby, and I’m here to stay.