An Ohio mom of two was excited to learn she was about to have a third baby at age 45.
But when her doctors told her that her unborn child had a rare birth defect, according to Liftable, it left Valeka Riegel questioning why she was able to get pregnant in the first place.Cincinnati Children’s/YouTube
It was during the fifth month of her pregnancy when Riegel found out her son had encephalocele; a tumor was seen on his face during an ultrasound. The birth defect caused tissue to protrude from his skull, covering most of his face.
Riegel explained to WCPO:
“You could see it on the ultrasound. So, of course, I did what we should never do – I got on the web and googled it – and that’s when my panic began.”
The mom detailed the confusion and anger she felt after the diagnosis in “A Letter to My 1-Year-Old Son, Who Had an Encephalocele” on the Cincinnati Children’s Hospital blog:
From the fifth month of pregnancy, I learned of your encephalocele and the choices I needed to make for both of us. In shock, I stared at the fetal MRI and ultrasounds because they were not consistent with the vibrancy I felt with every twist, turn, punch and jab. I knew then you were and still are a fighter.
For five months, I cried, became angered, fearful and resentful of God. Why would he bring you into my life, at the age of 45? Only to become a statistical probability of surviving 1 in 5,000 live births? I was confused.
But her confusion and fear didn’t go away after her son’s birth:
From the moment of your birth, we were separated into two hospitals. I saw you only for a second, because I hemorrhaged and was immediately intubated by the ICU team. They saved my life, while you were down the street fighting for yours. I could not see your face, only a large protrusion and tiny little lips – no eyes, no nose, no eyelashes. Yet, you were still beautiful to me.
Her son needed reconstructive surgery on his brain, skull, and face because of the birth defect. Riegel also had to hold her breath while doctors worked to rule out his tumor as cancerous.
Zakary spent the next four-and-a-half months in the ICU at Cincinnati Children’s Hospital, to give his little body time to grow strong enough for the intricate, nine-hour surgery he would need.Cincinnati Children’s/YouTube
Dr. Charles Stevenson, the pediatric neurosurgeon who led the surgery team, described to WCPO how extensive the process to remove the growth was:
“There were several steps involved in terms of exposing the forehead, exposing the defect, amputating all of that tissue, preserving the normal brain, and then reconstructing all of the normal layers or barriers which had formed.”
Riegel was ecstatic when her son’s surgery was over. She told WCPO:
“The first thing he did after extubation was smile, and 23 hours later he was out of the pediatric ICU.”
The relieved mother explained:
“I walked into that room and I cried because I just couldn’t imagine seeing a face – seeing his eyes, seeing his nose. I kept thinking, ‘There’s really a baby in there!’”
The great news kept coming following Zakary’s surgery. Not only did his mom learn that his tumor wasn’t cancerous, but he wouldn’t need any further surgeries.
The now-healthy baby was able to celebrate his first birthday on December 29.Cincinnati Children’s/YouTube
And Zakary’s reached many of the big milestones doctors were hoping he would. He’s crawling now and recently stood up for the very first time.Cincinnati Children’s/YouTube
The Centers for Disease Control and Prevention (CDC) reports approximately 1 in 12,200 babies born in the United States each year will have encephalocele. So, about 340 U.S. babies are born with this condition each year.
The exact cause of encephalocele is unknown, but scientists have found there is a genetic (inherited) component to the condition; it often occurs in families whose members suffer from other defects of the neural tube like spina bifida and anencephaly.
Encephaloceles are usually found right after birth, but sometimes a small encephalocele in the nose and forehead area can go undetected, according to the CDC.
In her online letter, Riegel thanked the doctors and nurses who cared for her child since his birth, saying:
I don’t know what lies ahead for our journey, but I do know we will cherish every moment we are granted together. I will never allow you (or myself) to say “I can’t.” We can endure all things if we are willing to accept life as it truly is – perfectly imperfect. We will love one another as we were designed to do —unconditionally.
As a nurse, I had medicine to believe in. But as a mom, I chose to surrender to my faith.
Watch Riegel discuss her emotional journey with Zakary below: