Catherine T. - 2024
Trust in Time
By Catherine Torres
July 2, 2020 was simultaneously one of the best days and worst days of my life. After a day of labor, my second child, a beautiful little girl named Amelia Skye was born. As quickly as the nurse placed her on my chest she whisked Amelia away. I remember thinking she had quite the vernix coating, that white stuff most babies are born with covering their skin. I knew the drill from my firstborn: the nurses needed to weigh her, wipe her, and take her temperature before they returned her. I looked forward to holding Amelia for the rest of the night. Except they didn’t bring her back to me. Someone said her temperature was too low and they needed to warm her under the heat lamp.
My obstetrician finished stitching me up, the nurses finished their duties and began exiting the room, and Amelia cried in the cot under my husband’s watchful eye. “What’s going on? Let me hold her,” I said. My husband had an odd expression while we listened to her cry. I finally pulled myself out of the bed and walked to her side. Underneath the top layer of white, peeling skin was fiery red. Her eyelids were turned out, and she was crying— crying so hard. Her temperature was low, but the heat lamp looked like it was frying her. Before I could pick her up a new set of nurses came in, two pulled the cot away (“Stay with Amelia!” I needlessly ordered my husband, he never intended to leave her side) while another nurse encouraged me to sit back down.
In my attempt to soothe my daughter, I had bled all over my legs and floor. The nurse helped clean me up before she led me to my daughter, who was still crying and looked to be in more pain than I could stand. The staff said they were waiting for the head pediatrician who might know what was going on.
When the doctor arrived he ordered the nurses to cover Amelia in petroleum jelly from head to toe quickly and ok’d a dose of something to help her sleep. Then he called for a pediatric ambulance to transport Amelia from the hospital on Lakenheath Air Base, where we were, to Addenbrooke’s Hospital in Cambridge, about thirty minutes away.
The doctor said “collodion membrane” and “ichthyosis,” words I asked him to repeat and would later Google in a confused fog in the loneliness of my hospital room. A hospital volunteer, unbeknownst to the gravity of our situation was desperately trying to make my husband and me smile. My family back in America lightheartedly demanded updates and accused me of being too obsessed with my newborn to answer them.
When the transport team arrived and began securing Amelia with blankets and straps I interrogated them. They were kind and understanding to a mother who was confused and incredibly worried. One EMT, who had worked with a collodion baby before, assured me Amelia would be under a very experienced staff at Addenbrooke’s.
The next day my husband and I visited Amelia. We learned she was born in a collodion membrane and will need to remain in the NICU in a humidity and temperature-controlled incubator while the membrane shed. For four hours a day over the next sixteen days, we could only touch Amelia with gloved hands, mostly through the hand holes in the incubator. While we were cot side, my husband and I bottle fed her, changed her diapers, and applied her hourly 50/50 liquid paraffin ointment, a thick mix of paraffin and white soft paraffin. At home, we still had a three-year-old son to care for. Due to COVID restrictions, our son wasn’t allowed in the hospital. My husband and I juggled an arrangement of a trusted sitter, a good friend with a son his age, and my husband and I switching NICU visits halfway, each go us staying with one of our children during our allotted visitation hours. Photos from this time in my life carousel from little Amelia in the incubator to my son happily chasing ducks at the park.
I felt like an empty shell and would wake up crying, feeling like I failed my daughter somehow. Because of ichthyosis’s rarity, family and friends didn’t understand what was happening and optimistically told us she would grow out of it. Wanting to breastfeed my daughter I diligently pumped milk and delivered it daily, but it wasn’t enough—nurses told me they had to supplement with formula because Amelia was consuming so many calories. They called her Nugget, a nickname that we still use, and, knowing we were anxious to bring her home, assured the doctors that my husband and I were fully capable of carrying on with her care. They also warned me about her powerful lungs, an attribute I suspect encouraged the nurses to begin the discharge paperwork.
About halfway through Amelia’s NICU stay, we were allowed to bring blankets from home for her to lay on. The nurses changed the blankets every few hours and I’d take a bag of soiled blankets home daily. I received my first lessons on laundering paraffin-soaked fabrics. Restless, I researched how the skin works, the nuances of ichthyosis, and the characteristics of individual ingredients in emollients. In the following year, I perfected a homemade emollient that I still make for Amelia today, and I eventually learned the ins and outs of rashes and various steroid and anti-fungal treatments. I leaned on a good friend whose daughter was born with Down syndrome, although a very different genetic condition, she offered tips for dealing with less-than-supportive and less-than-knowledgeable medical and administrative staff. I understand that I can’t change Amelia’s genetics, but I can help the skin she has perform to the best of its ability and make her as comfortable and confident as possible.
The genetic testing revealed Amelia has Autosomal Recessive Congenital Ichthyosis (ARCI) affected by the ALOX12B gene. The dermatologist confirmed she exhibits all the traits of congenital ichthyosiform erythroderma (CIE). We were lucky enough to be under the care of an excellent dermatologist who specialized in rare skin conditions. He pointed us to the FIRST organization and offered advice and a sympathetic ear. He said we needed time. It may be difficult right now, he told us, it might be confusing, scary, and frustrating that we can’t hold her or bring her home, but he said time will shed the collodion membrane and heal Amelia’s skin. In time we would learn more about her skin and her care, making life a little easier. He was right. The first weeks were difficult, the first two years were a lot of learning and frustrations, but now, after four years, my husband and I are confident in Amelia’s care and her skin has improved drastically.
My family recently visited a therapist. We wanted to get ahead of any potential name-calling and self-conscious thoughts we anticipate Amelia will experience as she reaches school age. After we finished talking about Amelia the therapist turned to me and asked about Amelia’s birth. I had never told anyone about what I felt—the confusion, the worry, the fears. At the time my stories were centered on Amelia. I would tell loved ones things like “This is what the doctors say,” “This is how her skin looks today,” or “I’m tired, but just glad she’s ok.” It felt selfish to focus on my feelings when my newborn was lying in the NICU without a proper layer of skin and not having been held in weeks. That day in the therapist’s office was the first time I verbalized how the entire ordeal hit me, sans an optimism mask. The therapist gently informed me that I had been through a traumatic event.
As parents, we want to protect our children. I want people to see Amelia’s spunkiness and her wit before they notice her skin, but, heartbreakingly, that’s not always the case. While she was a baby and didn’t fully grasp the world around her I could shield her from the stares and comments about her skin. But now, she understands. She answers other children, “I have ichthyosis” which typically warrants a very confused look from the inquiring child. She brings a small tub of cream to daycare and awes her teachers when she independently applies emollient to her dry spots. She’s finally begun to tell me when she’s getting too hot, instead of stubbornly refusing her neck fan and cooling towels. She loves dancing, swimming, monkeys and unicorns, adores her big brother, and I think she’s bold enough to become a fighter pilot one day. I don’t ever want Amelia to cower or feel less than because of her skin, but I also know some people will try to make her feel like that, so my job is to equip her with the confidence to disregard those negative comments and push forward.
July 2020 was both one of the best times and worst times of my life. I went through a trauma, but learned the importance of patience, time, and how even on my darkest days my husband and I find strength in each other and my children can make me smile.
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Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officals endorse any treatments listed here. All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.
