Mom to Dylon Ward

Born June 10, 2011
Died May 18, 2013

Centerville, Iowa

It was September 2010 when my husband and I started trying for our third child. We have 2 older children, both boys, and wanted a girl.
On October 1st, 2010 we found out we were pregnant. We were so excited. We found out we were having a boy! Three boys… oh my what a mad house we were going to have! We had a name picked out for him in a couple of hours, Dylon Ward.

I had a normal pregnancy (the easiest out of all three), normal sonograms, normal tests, normal everything. I was due on June 22, 2011, but since I had to have a C-section, I was scheduled a week earlier on the 15th. On June 10th, I started having contractions so my doctor went ahead and called for the C-section for that night.

It didn’t take very long to get Dylon out, but when they poked his little head over the divider, I noticed he had a cleft lip. I heard one tiny cat like cry and then silence. For what seemed like an hour, just silence. The look on my mother’s face told me something was wrong. I laid on the table praying that I would hear a cry and I finally did, a loud cry. I sighed in relief only to be told they were going to transport him an hour and thirty minutes away to the NICU.
I had to stay in our local hospital due to the C-section. I got a call at 3 a.m. that morning from a doctor at the NICU that informed me that it was a high possibility that Dylon had Trisomy 13 or 18 and that it was not compatible with life. With help from my local doctor, I was let out early and rushed to the NICU to see my baby that “only had about a week to live.” They ran genetic tests and after 4 days of waiting, found out it was neither. Dylon had a extremely rare chromosomal abnormality. He had a translocation, deletion and a multiplication of two different chromosomes.
The abnormalities caused cleft lip, severe cleft palate, webbed toes and fingers and the cutest little club feet ever. He also had a very slow learning rate, but we were just happy he was doing well. Although doctors had no idea of what to expect, we were extremely happy. He spent 3 months in the NICU and a rehab called Child Serve before he came home.
He came home on September 5, 2011.
He had a pretty good home life and he seemed to be getting better and having fewer problems as time went by, until he started having seizures at about 8 months old. He was diagnosed with infantile spasms. They weren’t so bad after they found the right combination of medications for him.

A year goes by and he is pretty healthy and active. He was rolling around from here to there, eating his hand, yelling, watching cartoons and cuddling with his oldest brother and all-in-all, a happy baby.
He was 22 months old when he developed chronic epilepsy. The seizures were hard and tiring for him. He stayed in the hospital for a week while the doctors tried to figure out a medication combination to stop or slow down his seizures. They thought they had a combination that worked, so they sent him home.

That night at home was going great, but the next day was horrible. He was having a seizure every 30 minutes to an hour, so we rushed him back up to the university hospital.
He had a 15-minute seizure that night in the hospital that led to a stroke. His whole right side of his body was unable to move. The seizures were uncontrollable. That morning, I was informed by the palliative care team that Dylon would be going home on hospice care. My world came crashing down that day. So many questions. Why?! What did I do? What could I have done? I was a mess. I couldn’t believe they were putting my baby son on “end of life care” that’s for people who have lived long, fullfilled lives!
We came home on April 24th and everything looked to be ok. He was alert, he slept well and was eating fine. On April 26th, he was in pain and his breathing was labored. His doctor came to my home to check him out and informed us that he aspirated and wasn’t strong enough to get through it. They started comfort measures for him. Now we were waiting for him to pass away. Waiting for him to pass away. My worst fear was becoming a reality.
It was three long weeks and Dylon was getting worse and worse. On Saturday May 18th, 2013, Dylon took his final breaths and went to heaven.

It was the worst day of my whole entire life.

The guilt I felt/feel is overwhelming at times. As a parent, your first instinct is to protect your child from anything. Why couldn’t I fix this? What more could I have done? Why did this happen? Was I not a good mother?

Of course I am a good mother. I did everything I could. Those are all natural feelings and hard to brush off.
It’s only been two weeks since he left us for better things [at time of writing],but the pain of not having my little Dilly here is sometimes unbearable. My sons (Parker 4, and Ray 8) have taken this as hard as I have. I know in time we will heal. We have surrounded ourselves with family and friends to help ease the pain.

I miss holding him, touching him, hearing him and smelling him, but I know he is in a better place where he can walk, talk, sing, dance and run.

I am writing this as his 2nd birthday comes up, only 5 more days. Happy Birthday to My baby man, lil’ Dilly Doodle. I know you will have a blast in heaven! Love Mommy!

You can email Jessica at: j_shondel@hotmail.com

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