Throughout the nine months of pregnancy, a mother’s heart is filled with anticipation, excitement, and a hint of doubt. When an expecting parent gives birth, they all want the child to be healthy and happy. Regretfully, our expectations are not always met by the way things work out.
Jennie Wilklow, of Highland, New York, was looking forward to meeting her daughter. Jennie and her spouse were overcome with happiness the moment they held their baby.
After multiple ultrasounds and check-ups with the physician, the results consistently showed a healthy baby.
This assurance put their minds at rest, and they had no idea that their darling Anna would be born with a disease that would permanently alter their lives.
At 34 weeks, Jennie had a C-section to deliver Anna. She peered into Anna’s eyes when the physicians placed the baby in her arms and felt an overwhelming sense of love.
Everything was going fine with their cute little one. However, Jennie couldn’t help but feel apprehensive about her husband when he came to visit her.
Jennie told Cafe Mom, “My husband’s silence scared me.” I pressed him for additional information as the doctor was leaving the room, and he just sat there looking shocked. With remorse, he added, “It’s bad.”
Upon meeting her gaze, her spouse said, “Jennie, she has the most beautiful soul.” Jennie did not know what such terms meant at the moment. Her mind was racing, but she had no idea what was wrong.
Anna suffered from an uncommon disease known as harlequin ichthyosis, which showed up as thick, severely fractured diamond-shaped plates. Jennie said to Cafe Mom shortly after giving birth, “Her delicate skin hardened as they desperately tried to help her.”
The dramatic splitting that followed the hardening left her slathered in open wounds throughout her body.”Anna prevailed despite the physicians’ concerns about her prognosis. She was quite beautiful,” Jennie proudly declared.
Unfortunately, there is no known cure for harlequin ichthyosis. The treatment involves regular showering and thorough skin moisturization, which takes consistent effort. I used to bathe her for hours every few hours, slathering her in Vaseline.
It might not seem like much, but it was one of the things I struggled with the most. I had visualized all the amazing clothes my child would have,” Jennie said.
She set up the “harlequin diva” Instagram page and started posting images of Anna there in an effort to raise awareness of this illness. Through her articles, she sheds light on the challenges faced by parents of children with harlequin ichthyosis on a daily basis.
“Anna won many people’s hearts and is the pinnacle of perfection in its purest form.” She has a natural capacity to carry out these mundane tasks. The world celebrates with us every time we achieve a new milestone, Jennie said to Cafe Mom.
She went on, “I now realize that my love for my daughter is the reason Anna was given to me.” Because we were destined to be together, we will work together to redefine what true beauty means to the world.
In addition to being beautiful in her own right, Anna is fortunate to have parents who will stop at nothing to ensure that she has a happy existence.
Let’s help spread the news about Anna’s story by inviting our friends and family to read this article on Facebook. Despite our differences, we can work together to raise awareness of and respect for the incredible beauty and power that each individual holds.
Parents say goodbye to their newborn as life support is switched off, then he starts breathing immediately
Most moms will agree pregnancy and labor can be a scary time and all you want is to deliver a healthy baby, kicking and screaming.
But one mom was faced with the unthinkable when her baby boy was born with medical issues that left him on a ventilator.
Lisa Hough shared an image of her sweet baby grandson born to her daughter Chelsea and also shared the unthinkable tough decision that her daughter had been faced with.
The mom of three and nana of two said her grandson Karson had been born with many medical complications.
“The only way to describe what has happened is that this beautiful baby boy has suffered two very rare traumatic conditions that are completely unrelated to one another,” Nana Lisa shared on her Facebook page.
She added her newborn baby grandson had suffered a “hemorrhage in the left temporal lobe” and had also been diagnosed with a rare, genetic, metabolic disorder called Non-ketotic hyperglycinemia (NKH).
“His case is presented as severe and would cause him to be severely neurologically impaired – functioning at a 2-3 month old level at best for his lifetime,” Lisa wrote.
His mom, given all the information from the medical staff around her, made the incredibly tough decision to take him off life support.
Lisa wrote of the heartbreaking moment they had to say goodbye to their sweet little one.
“While we weren’t ready to say goodbye to Karson, we had come to terms with the inevitable. We were given 10 minutes after withdrawing intensive care and the ventilator and told he would not breath on his own and to expect his heart to stop within those 10 minutes.
But, according to Lisa, it seemed “God had other plans” and said she and her daughter witnessed a miracle.
“He immediately started breathing on his own once the ventilator was removed, heart rate and oxygen stabilized, and here we are 5 hours later with this miracle baby that we were told would never breath, swallow, have gag reflexes, or even survive. He is breathing unassisted.
“He is swallowing. He is surviving. He even has slightly opened his eyes a couple times today.”
She said his doctors had no explanation for what happened saying no medical or science data supports this little fighter surviving; the only explanation they have is that it’s a miracle.
“I’m not sure why I ever thought we were so underserving of a miracle…and I’m not sure how long we have with him, but we have him now. And now we will take,” Lisa wrote.
Finally, on March 1, she and her family were given the joyous news that their tiny bundle of joy would be coming home that week.
“Every day, I am brought to my knees, and just when I think God is done, I am quickly reminded that he isn’t….I have no words for my gratitude and I will praise Him for as long as I have air in my lungs for giving Karson his,” Lisa wrote.
From her very first post, commenters were fully supportive of the journey, celebrating the survival of Karson with more than 30,000 reactions to the post announcing the wonderful news that Karson survived and is thriving
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