“This new mother’s screams could have pierced eardrums and shattered windows because of their sheer intensity. You wouldn’t expect a new mother to scream like that upon seeing who she had given birth to. Atina lay in the hospital bed, unmoving, as doctors operated on her. Suddenly, she twitched in her sleep and groggily, her eyes fluttered open like a butterfly coming out of its cocoon.
Her vision was blurry at first, and she couldn’t make out anyone’s face or the room she was in. But when it adjusted, she saw medical scrubs, gloves, and a nose mask holding what looked like a naked, shiny, sculpted baby. Confused and wondering if her eyes were playing tricks on her, she blinked a few times and looked again. The scene before her hadn’t changed, which meant it was no mirage. She glanced around and saw she was in the hospital room where they had brought her to have her baby by C-section.
Was the baby in the medic’s hands the baby? But she reasoned that it couldn’t be because the baby didn’t look real. Maybe it was a cast or something, Athena assumed. However, the cast in the medic’s hand started crying, and parts of the body were moving. To Athena’s shock, but the baby’s movements weren’t fluid and smooth like a normal human being’s. It looked like when you watch fantasy movies and the stone comes to life; the stone moves as if in slow motion and as if every move is calculated and unnatural. That was how the baby’s movements looked in Athena’s eyes. All of a sudden, she couldn’t breathe; the room turned stuffy, and she gasped for air.
There was pressure on her throat and chest that wouldn’t let up, and a drowning sensation flooded her entire being. She didn’t have to confirm from any medic in the room to know that the shiny stone baby with striations on its skin was hers. A scream tore out from her throat, and she started thrashing around in bed as if convulsing. It was only then that the medical personnel saw she had woken up in the middle of surgery because somehow the anesthesia had worn off early. They had all thought she was screaming out of pain considering the surgery wasn’t over yet.
They didn’t know she saw her baby and was experiencing intense shock. Two doctors tried to hold down her upper body while two nurses held down her legs. It was the only way to bring her under control or she might hurt herself. Another doctor hurried and administered a heavy dosage of general anesthesia via the IV hooked up to a blood bag. It worked instantly, and soon Athena’s screams abated, and she nodded off to sleep. Once she was sound asleep, they checked her vitals to see if it was all right.
They confirmed it was, and the doctors hurried and finished up the surgery successfully. It was a shock to them that she woke up during surgery; they hadn’t known she was a FastTrack patient capable of recovering quicker from normal doses of anesthesia. Or they would have administered a heavier dose than usual from the start.
Many hours later, Athena woke up for the second time. She jerked awake, sitting up in her bed as though she’d been having a nightmare. Still breathing heavily, she took in the room. It was not the same one where the operation had happened; this room was cozier by all standards. She suspected her husband, Dennis, had paid a decent sum for it. The moment her husband crossed her mind, Athena wondered where he was. She called for him, but there was no response.
On the stand beside her bed, she saw a note where he wrote he was stepping out to eat and would return soon. Before she finished reading the note, the door to her room swung open, and he came in. His face lit up when he saw that she was conscious; he ran to her side to ask if there was anything she needed and how she was feeling. Athena didn’t hesitate to ask for her baby.
Was it a boy or girl? She didn’t even know because they’d wanted to be surprised. Smiling tentatively, Dennis congratulated her on giving birth to a daughter. Athena breathed a sigh of relief, but when she asked to see the baby, he tensed. His gaze flickered everywhere—the curtains, the windows, the wardrobe, the bed, the floor. His behavior was suspicious and made her realize that something was terribly wrong.
Taking hold of his hand, she squeezed it so tight he winced and wiggled his hand free. She demanded to know what had happened. Instead of giving a direct answer, he replied that everything was under control and would be fine. She didn’t believe him. Athena recognized the racing of her heart, her sweaty palms, and dry mouth. She had a bad feeling, and if past experiences were any indication, it would drive her mad unless she got to the root of it. Determination fueled her to keep pressing.
Did something go wrong because her water broke too soon, and she delivered her baby five weeks earlier at 34 weeks? Dennis refused to answer, and that bothered Athena more than anything else. Dennis was a man who, from the day one that they met, had always been honest with her. He was a tough love kind of guy who presented facts as they were and didn’t have time to play games with anyone’s mind or emotions.
Athena used to have a lot of pretense going on in her life, both from herself and others, but the moment Dennis had walked into her life, it had never been the same. Athena’s mind traveled through the possible worst scenarios and only landed on one: the baby was dead. As soon as she thought it, Dennis saw it in the widening of her eyes and in the ‘O’ of her mouth.
He could read her easily like that. He rushed to assure her that it wasn’t the case; their baby girl was alive and breathing. What, then, was the problem? Athena mused. She didn’t like how she felt, and she knew that the only way to dispel the dark clouds of fear that had settled over her was to get to the root of this mystery.
In the early hours of the morning and the darkest part of the night, Athena slid out of her bed and got dressed. She ignored the soreness in her midsection, and it didn’t bother her much because, as a former athlete, she was used to living with considerable pain, which made her pain threshold rather high. Athena snuck out of the room and started making her way towards the neonatal Intensive Care Unit where Dennis had said their baby was.
She didn’t worry too much about getting caught because this was the hour almost everyone was either asleep or wanted to sleep. Athena was passing by a nurse’s station when she heard voices. Quickly, she ducked behind the pillar. Some heartbeats later, she started hearing what the voices were talking about. The voices belonged to the nurses on duty, and they were discussing a baby with a rare skin disorder caused by genetics.
This baby belonged to the woman in room 13. Vaguely, Athena remembered seeing that number on her door when she closed it behind her. That’s when it dawned on her that the nurses were discussing her baby. Instantly, she paid more attention; frowns marred her forehead. Did they just say that her baby had a rare skin disorder because of her genetics? Athena had goosebumps, and she felt her hands trembling. She was transported back to being a child with two emotionally unavailable parents.
She hadn’t been good enough to keep them together; her parents had been forced to get married after they got pregnant while fooling around. They had never gotten along, and getting stuck together had caused resentment to breed between them. Athena had never been able to break through it to either of them that, no matter how hard she had tried to please and be cheerful, no matter what, that eagerness to please had followed Athena everywhere she went, and people had been repelled by it, perceiving it as desperation to be loved. They had mocked her when they thought she wasn’t within earshot; her parents had made things worse by saying to her face that she didn’t bring anything good into their lives, only baggage.
Athena hadn’t been good at school or crafty with her hands to stand out at something. Athena had taken figure skating seriously because she had some talent in it. Fortunately, her high performance had gotten her several sponsorships and medals. Even with that, she had been afraid of what would happen if she wasn’t at her best. In her transition from solos to pairs skating, she had met Dennis, who became her first and only partner. Over long months of working together, they had fallen in love, and in the process, he also became her protector.
In her mid-20s, Athena had been close to winning the Olympics when she sustained the career-ending injury. At first, it had been a low sprain at her ankle, and it had taken months for her to recover. Following that, she had suffered a major fall, and her spine had been operated on. The doctors had recommended that she retired unless she wanted to kill herself. Athena’s coaches and parents had looked at her as if she was a failure and had missed out on a golden egg, and it was all her fault.
Had it not been for Dennis, Athena would have lost her sanity. They had all wanted something from her, but no one had given her anything, not even genuine care, except Dennis. He could have found another partner and continued skating, but he had decided to retire with her. They had gotten married, started coaching upcoming figure skaters, and set up a sportswear company. All Athena had wanted was to be the best wife to him; she was always trying so hard that he sometimes yelled at her to stop. He would tell her that she didn’t have to earn his love; he wasn’t going to walk out on her like everyone else in her life.
Dennis had loved children, so when she had found out she was pregnant, she had been so happy until her water suddenly broke weeks away from the expected delivery date. The worst was the present moment where she was hearing her baby had a genetic problem. Athena blamed herself right away; it was her genes that caused harm to her baby. She wanted to see her baby all the more to know the extent of the skin condition.
However, as the NICU came into view, Athena saw the notice that only approved personnel could go in, and she wasn’t approved. A nurse dressed in protective clothing from head to foot came out from the NICU and sighted Athena, who was standing in the middle of the hallway.
The nurse noted Athena’s hospital gown, her messy state, and tear-streaked eyes. She guessed she was a mother who had a child in the NICU, but she couldn’t let her go in there without dressing for it, or it might endanger the babies there. The nurse kindly approached Athena, explained she could see her baby during the day, and accompanied her back to her room.
By dawn, Dennis came to the hospital and found Athena on her bed, sobbing. She started apologizing for the damage her genes caused to their baby. Exasperated, he scolded her for blaming herself again for something that wasn’t her fault. Besides, it took two to create a baby, and they needed to hear from the doctor first. Athena had a bath, dressed neatly, and went with Dennis to the doctor’s office.
There, the doctor explained to them that their baby had a condition called harlequin ichthyosis. It’s a rare and genetic skin disorder characterized by thick, diamond-shaped plates of skin separated by deep cracks. This condition is caused by mutations in the ABCA12 gene, which is involved in the development of the outer layer of the skin or epidermis.
Because Athena’s baby had harlequin ichthyosis, she typically had very thick, dry skin that was prone to cracking and splitting. The tightness of her skin could restrict movement and affect the function of her eyes, ears, mouth, and other organs. Additionally, their baby was at increased risk of dehydration, infection, and respiratory complications due to her skin’s inability to provide a protective barrier.
After the doctor was done explaining the condition in detail, Dennis recalled he had a cousin with the condition who had passed away years ago. Alarmed, the doctor rushed to add that the prognosis for individuals with harlequin ichthyosis had improved in recent years with advances in medical care, including intensive skin care, hydration, and the use of topical treatments. However, he was honest enough to admit that it was a life-threatening condition that required lifelong management by a team of medical specialists, including dermatologists, pediatricians, and genetic counselors.
Hearing that their daughter’s condition could be managed gave the couple renewed hope. They were determined to do whatever was necessary to ensure the best quality of life for her. Thankfully, they had the means. Armed with knowledge about her child’s physical condition, Athena was finally ready to meet her. The first time that Athena laid eyes on her baby, old Kimberly, tears welled up in her eyes. It wasn’t just because her baby looked delicate and stiff, but a strong surge of maternal love overwhelmed her, and she knew that she wouldn’t have Kimberly any other way. She would love her unconditionally as she was.
During the months that followed, Athena’s full-time job became caring for Kimberly. Dennis assisted sometimes, but his attention was on their business. Athena didn’t miss a doctor’s appointment, and she always ensured that Kimberly’s thick, tight skin was adequately hydrated. She applied emollients and moisturizers often.
She also fed her supplemental fluids. One day, Athena slept off from exhaustion and woke up an hour later than scheduled. She was supposed to feed Kimberly fluids and moisturize her skin. In just that one-hour delay, Athena observed that her baby’s skin was tighter. She also noticed breathing issues and suspected an infection as well. Athena panicked and rushed her to the hospital, where she was treated with antibiotics and other specialized care.
Once it was checked out that Kimberly was fine, Athena hired help. She used to think her daughter was her sole responsibility and she had to deal with her alone, but now she realized that for the sake of her daughter, she had to get help. Athena had some trouble receiving help, but for her daughter’s sake, she started learning. Special care had to be taken when bathing Kimberly, especially around her joints that were prone to fissures. She had to be kept warm but not overheated.
Kimberly was doing well for a child with her condition, but Athena was most worried about how she would be received when she started school. At the end of kindergarten, Kimberly’s class prepared a presentation for parents, and to Athena’s shock, her daughter was the main character. Happy tears slipped out as she saw the genuine care and attention the other kids paid to her. She was glad she didn’t homeschool her girl like she wanted. Kimberly had taught both her parents so much, and now Athena realized she had done the same with others. Their little girl had had a beautiful impact on others; she might have been physically challenged, but it was obvious that she had a bright future ahead.
