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.
A tiny baby, who was kept in a sandwich bag for safety, is finally going home.
The parents of a baby named Robyn, who was born very tiny at just 11 ounces (328 grams), have finally brought her home after 18 months in the hospital.
Robyn was born five months early in March 2023 at Grange Hospital in Cwmbran, Torfaen, and she still needs special care all the time. Her parents, Chantelle (34) and Daniel (38) from Malpas, Newport, are raising money for her treatment. Chantelle said, “It’s like a dream come true to have Robyn home.”
Robyn was born at just 23 weeks and 2 days and was so tiny that she could fit in the palm of a hand. To keep her organs warm while she grew, she was kept in a sandwich bag.
After six months in the hospital, she spent another seven months in the pediatric intensive care unit at Noah’s Ark Children’s Hospital in Cardiff. She then returned to Grange Hospital until she was finally discharged in September.
Chantelle, who works part-time as an accountant, said, “It’s just so nice to do normal family things… and just all be together under one roof.”
Daniel, a self-employed bricklayer, mentioned that it’s much less chaotic at home now. He has had to cut back on work to focus on taking care of his daughter.
Robyn gets oxygen and nutrition through tubes in her nose and mouth, and her vital signs are watched all the time. She takes 30 doses of medication each day.
Her mom, Chantelle, explained, “She can’t cough, so we have to suction her mouth and nose throughout the day when she needs it.”
Daniel described Robyn as doing well and enjoying the “peace” of being at home. He added that they do a lot of physical therapy and play with her to help her senses.
Chantelle said it was tough to bond with Robyn in the busy hospital ward, with doctors and nurses always coming in and out.
“All you can do is sit next to her and watch,” she explained, “keeping an eye on the numbers on the screen and hoping she will be okay.”
“When Robyn was born, we weren’t sure if she would survive.
“As time went on, she grew bigger and stronger, but she still faced many problems. It became clear that her brain damage would have a big impact on her.”
‘We know nothing is impossible’
“We didn’t learn about her brain damage until about six months after she was born,” Daniel said.
“You have all these plans for how life will be, and then everything changes,” he added.
“But we try to stay positive.
“We know that nothing is impossible for Robyn because she has been told so many times that she wouldn’t be able to do things or even survive, but she keeps proving everyone wrong.
“She’s full of surprises, and I believe she will create her own story.”
Leave a Reply