Every parent who gives birth to a child wants their child to be healthy and whole, but there are many cases where children are not lucky enough to have a normal body like other children. As in the case of Jennie Wilklow in New York (USA) below, her daughter Anna was born with a disease called Harlequin Ichthyosis (an extremely rare form of ichthyosis) that causes her skin to crack. out and then freezes. But even so, Jennie still loves and sees her child as an extremely adorable child.
The following thoughtful sharing from Ms. Jeannie Wilklow helps everyone better understand this rare disease and the journey she and her daughter had to go through:
I had a normal pregnancy until my water broke at 34 weeks. All the baby’s statistics were very good, we decided to have a cesarean section because the baby was upside down. It’s all very calm and wonderful but it’s not.
When the baby was born, I heard the baby cry and the doctors said, “The baby looks so adorable.” Those are just the words every mother wants to hear, so I smiled and relaxed. But behind that, things are getting very scary.
Baby Anna has the rare disease ichthyosis, this is not a disease that everyone, including those in the medical field, knows about. As doctors tried to save the baby, the baby’s skin hardened for a few seconds and then suddenly cracked, causing open wounds all over the baby’s body.
Lying behind the surgical curtain, I began to feel the doctor’s frantic, panicked feeling and I asked if everything was okay. The doctors answered yes and asked if I wanted more medicine to calm me down? Then I got out and understood what was going on. My husband was called out to research larger hospitals, and was also informed that the baby had a condition that no one knew exactly what it was.
When the doctors told me that my baby had a birth defect and said he could have surgery in 2017 and be cured, I thought, “It’s okay, I can handle it.” My husband’s silence scared me, he just sat in shock as the doctor left and when I pushed him he just said, “This is bad!”. I thought to myself, “What does this mean ?”. He told me: “Jennie, I looked into your eyes and saw that you have a beautiful soul.”
Over the months, your baby’s skin has been growing at a rapid rate and immediately when exposed to the air, it begins to dry out. Your baby’s fingers are clenched and turning blue and his toes are pinched because the skin is too tight. Doctors tried to diagnose the disease, but they had never seen anything like this.
Days later, when I met my baby and saw his eyes for the first time, I remembered what my husband said. The baby looks so beautiful, so pure. When doctors started trying to get the baby used to the outside air, trouble came.
The first day I was excited to choose an outfit for her, but after only five minutes after leaving the humidity control box, Anna’s skin became dry and thick and she cried in pain. The next day, we tried again but this time we covered him with Vaseline and then wrapped him in a plastic bag lined with sanitary cloth. This time the baby endured longer, but when I held him in my arms, my heart felt like it was breaking.
I think the baby will have to live in a plastic bag forever and how will he survive in the future? When leaving the hospital, a woman in the elevator kept trying to look at the baby. Our nurse immediately protected Anna from the other woman’s reaction.
The following two months were the worst because I felt alone, broken and hopeless. My sister, mother, husband and friends helped take care of the baby and the only clothes he could wear were fleece pajamas. Every few hours I apply Vaseline and bathe the baby several times a day. I’ve been dreaming for years about what my kids would wear and even though it seems trivial, it’s something I’ve struggled with immensely.
Later, after talking with my husband’s friend – who had lost two children in a row, I decided to focus on what I could do instead of what I couldn’t. If Anna could only wear fleece, I’d choose the cutest pair of fleece pajamas I could find and coordinate each day with the hat she wears.
As time passed, Anna’s skin shed the excess skin and I became more confident in taking care of her. My sister and I have tried every type of lotion and oil. For her head, I worked for many hours to remove the excess skin, unfortunately her hair was removed as well. I set small goals and each time I achieve one, I celebrate in a big way.
Anna has captured everyone’s hearts because she looks perfect in the purest way. Anna taught me how to focus on all the positives and that everything has a reason. There were times when I blamed myself for Anna’s condition. Now I understand that I was given her because of the love I carry in my heart for her. Anna means so much to me and together we will show the world what true beauty is.
