When you are about to become a new parent, you never know what to expect. Most parents are pleasantly surprised, but some parents get the shock of their lives after their baby is born. That’s exactly what happened to 46-year-old Valeka Riegel.
At a prenatal ultrasound, she found out that her son had a rare condition and that he might be born with a deformity.
She tried her best to prepare for her son and knew that she would love him no matter what, but she was nervous.
When she did give birth to her son, Zakary, it was just like doctors had warned. The baby was born with a sack of fluid over his face. It almost looked like a small balloon in the middle of his tiny face. This sack is called an encephalocele, and it is where the baby’s brain tissue collects when the skull doesn’t close completely during prenatal development.
Thousands of babies are born with this condition every year, but it doesn’t make it any less shocking for the parents.
Luckily, Zakary was otherwise healthy. Still, Valeka was sad that her baby was going to have to deal with such a condition. She wasn’t prepared for how bad the deformity would be and was overwhelmed when she first saw him.
She wrote about her ordeal on a hospital blog:
“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. As a nurse, I had medicine to believe in. But as a mom, I chose to surrender to my faith.”
Zakary had to spend four months in the NICU until he was old enough to handle the long and complicated surgery that he needed to remove the sack from his face.
Zakary’s pediatric neurosurgeon, Dr. Charles Stevenson, said:
“He had a defect in the sac around the brain and a defect in the bone. We had to reconstruct that as it was meant to be.”
Another doctor who assisted with the surgery, Dr. Brian Pan, said:
“The rarity of these conditions just made it a very interesting patient to work with.”
Once the sac was removed, they had to test it to see if it was cancerous.
This was something else that Valeka worried about. Luckily, it was benign. Valeka was finally able to look at her son and see his face. The large sac was no longer blocking his features.
“I had come to fall in love with this little boy with this big ball on his face,” she said. “He always played with it… the first couple of days, he kept swatting at his face, like ‘Wait a second, I’m not seeing it; I’m not feeling it.’”
Zakary recovered well from the surgery, and a year later, he is a normal little boy.
He still has a few scars from the sac, but his family and friends don’t even notice them. His mother continued to write on the hospital blog. On his first birthday, she ended her post 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.”
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