Mom’s Touching Story Reminds Us Why Every Baby’s Life Matters

We showed up to our routine ultrasound at 22 weeks pregnant, excited to see our little baby move around….we never imagined in a million years how our lives were going to be ever changed from that day on.

After the ultrasound tech did some measurements, she got very quiet and said the Doctor needed to see us.

Immediately we knew something was up.

The Doctor then said our ultrasound was abnormal, and so she was sending us to a high risk doctor for a second opinion.

Fast forward to that visit…

We arrived at the high risk pregnancy doctor.  Already on pins and needles, we did our new patient paperwork, and waited for our turn to be called. Once we got back into the exam room, I laid down, and the Doctor started another ultrasound.

Within 20 seconds of starting the ultrasound our entire world came crashing down. I will never forget his words.

The doctor said: “THIS IS BAD. THIS IS VERY BAD.”.

He then proceeded to tell us what he saw. He explained that our baby’s brain was abnormally formed and that the two hemispheres of the brain were not properly divided. He diagnosed our baby with a condition called HOLOPROSENCEPHALY.

Because of this, we were told our baby would be born a vegetable, was not compatible with life, and we were extremely pressured to terminate our pregnancy right away.

My husband and I were completely heart broken.

We quickly searched out a second opinion and found an amazing high risk Perinatologist. This particular doctor gave us HOPE. He did another ultra sound and agreed with the diagnoses of Holoprosencephaly. However, he told us he cannot predict the future.

He told us children with this condition have a range of developmental disabilities, but he was not God and therefore could not predict our future.  He told us that if this was his child, he would absolutely not terminate the pregnancy. Quality of life would be there for our child. But our child would need to show us what he is capable of.

After hearing those words, we proceeded forward with our pregnancy!

Bradley was born on May 15, 2013 and was very healthy and thriving!!! He was pretty darn handsome too!

He had a normal infancy. We didn’t start to notice any delays or differences until about 6 months. We noticed Bradley was not yet rolling around or sitting independently. Our pediatrician referred us to physical therapy to help him gain muscle strength and help his mobility.

As time went on, we noticed more delays and more milestones that Bradley was not hitting. We continued with his therapies (physical, occupational, and speech therapy).

When Bradley was 18 months, he started having seizures. We went to a neurologist in Las Vegas who was not able to stop the seizures. After an MRI and countless EEGs, the seizures were getting WORSE.

We were trying to get into another neurologist office in Las Vegas, but the wait time was extremely long. We decided to travel to California to see the head Neurologist at Children’s Hospital of Los Angeles.  What a positive life changing experience this was!

CHLA did more EEGs and found out Bradley had been misdiagnosed. The type of seizure he was suffering from was called Infantile Spasms. This is one of the worst types of seizures a child can have. They are extremely hard to control…and the longer you have them, the more damage there is to your brain.

After we returned to Las Vegas, we were able to be seen by the top pediatric neurologist in town. Within a couple months, the neurologist had Bradley on several different medications and finally found the magic one.

Nick and I had to give Bradley daily injections of a very strong steroid. After a couple months of treatment, IT WORKED!

Bradley was seizure free!

Unfortunately as a side effect, he ended up in the hospital for extremely high blood sodium.  However, this too passed and we were soon healthy and happy again at home.

Fast forward to today….

Bradley just turned 4 years old and is thriving! He has had two rounds of seizures (the first lasting a year, and the second only a month). But we just got word that his latest EEG showed that he is CURRENTLY SEIZURE FREE!!!!!  (Bradley LOVES Olive Garden, so of course we had to celebrate with Olive Garden take out)

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He goes to physical therapy twice a week and absolutely LOVES IT! He loves his therapists and loves the interactions with the other children at the clinic.  He walks in his gait trainer and just received a new pair of AFOs (braces for his legs/feet). He is doing some really great independent sitting and his leg strength and balance is constantly improving.

Bradley definitely keeps us on our toes. It’s a full time job caring for a special needs child, but I couldn’t imagine life any other way.

If I’m being honest, I have bad days.

I have days where the stress is too much and I just want to stay in bed all day and avoid everything.

But luckily, the good days outweigh the bad. We celebrate every victory and milestone, no matter how small.

Throughout our journey with Bradley I have learned a few things.

I could choose to be sad and depressed that this perfect life I had hoped for was no longer my reality. I could dwell on the fact that our lives revolve around medical bills, constant EEGs, and doctor/therapy appointments.

Or I could choose to be HAPPY and GRATEFUL that I am able to be MOM.

Yes, my days are challenging, but that’s part of life. I celebrate my time with Bradley; I take an unbelievable amount of photos because I want to document everything!

I brag about all of his accomplishments (big or small), and I am just so proud to be his mom. We are so proud of Bradley for everything he accomplishes.  He has been through more in his 4 years of life than most people do in a lifetime.  Nothing was guaranteed for Bradley and he works hard every day to constantly learn and improve.

I’ve also learned to ask for help.

I’ve searched out support groups (thank you social media) and have found so many families that have a child similar to Bradley. We were lucky enough to attend a conference in Texas last year and made lifelong friendships with these families. Just knowing that we are not alone on this journey is an amazing feeling.

I have my very own miracle that I get the privilege of caring for everyday and I never want to take that for granted.

Only Bradley knows what his future holds and we are letting him show us the way one day at a time… we could not be any prouder of him!

Danielle is the owner of Today's the Best Day. She strives to provide creative and uplifting content in order to enrich the parenting experience for women everywhere. Danielle hopes to help you and your family to make every day the best day!

July 25, 2017 by Danielle Davis | 5 Comments