My 2-Week-Old Baby Received A Scary Diagnosis. Her Doctor Left Us With An Ominous Warning

The author and Sarah in 2014.Two weeks after our daughter Sarah’s birth, my husband Ben and I found ourselves standing in a geneticist’s exam room. I placed Sarah’s baby carrier on the floor and she kicked her legs and cooed at my feet.The geneticist, Dr Brown, and her assistant entered the room and briskly introduced themselves. After measuring the circumference of Sarah’s head, Dr Brown plucked an old medical textbook from the shelf behind us, blew the dust off it, and instructed her assistant to copy the page “about Apert syndrome”.This was the second time I’d heard that phrase – Apert syndrome – and still, I didn’t know what it meant. Not fully, at least.I knew that Sarah’s head was shaped differently than most newborns, which we were told was likely due to the fusion of one or more sutures in her skull. She was born with what we affectionately called mitten hands, because her fingers were conjoined and wrapped in one smooth layer of skin. Her feet were the same.Dr Brown spoke with confidence, as if she’d had this conversation with enough people throughout her years of practice that Sarah’s diagnosis was obvious. I don’t recall the words she spoke that day, not specifically. Everything she said was filtered in muted and muffled tones, as if we were standing in a tunnel and everything spoken changed into gibberish – nonsense.Ben stood to my right and responded to Dr Brown with nods and “mm-hmms”. I let him take on this role, because all I could do was skim the photocopy of that single page from the medical textbook. We’d already heard that most people with Sarah’s diagnosis would undergo between 20 and 60 surgeries throughout their lives, and I needed to understand why. Hands shaking, I read each paragraph with increasing fear, as dense medical terminology became word soup in my overtaxed brain:Craniosynostosis: premature hardening of one or more cranial plates of the skull during foetal development that requires multiple corrective surgeries to prevent permanent brain damage or death;Syndactyly: fusion and webbing of both hands and feet, also present at birth and requires complex orthopaedic operations to separate each digit individually;Dental development: small mouth, often vaulted or cleft palate, may need years of oral-maxillofacial surgery and orthodontics;Nervous system: most severe cases include chiari malformation, where a portion of the cerebellum pushes through the base of the skull. Hydrocephalus is possible and should be monitored regularly through CT scans of the brain and ophthalmological exams of possible intracranial pressure behind the retinas;Developmental delays: likely will need occupational and physical therapies for assistance in developing fine and gross motor skills;Intellectual disability: some people with Apert syndrome may test at a lower IQ than average and will need academic support.The litany of potential co-morbid conditions continued with “other bodily systems” affected by this slight alteration in Sarah’s genetic coding. Maybe she’d have cardiovascular concerns, like a heart murmur or a congenital heart defect. She could end up with skin problems, like eczema. I glanced at Sarah and noticed the fungal scales curling around her hairline, too – a severe form of cradle cap. My heart thrummed as the words on the page blurred. Gastrointestinal issues.Genitourinary (I’d never heard of that word before). Hearing loss. Pulmonary problems. What were we dealing with? What was going to happen to our baby girl?Sarah holding a People magazine featuring Taylor Swift, her favourite singer, in 2024.Before Dr Brown left Ben and I alone with Sarah, she said flatly, “Oh, and about 85% of couples in your situation either end up divorced or addicted. It’s important to be proactive in seeking therapy, to mitigate the likelihood these will happen for you.” Her warning hung menacingly in the air between us.I crumpled the paper and clutched it as I balled my hands into a fist. Swallowing the urge to cry, I turned to Ben. His eyes were wide and sad, and I knew we were venturing into terrifying parental terrain – marital, too.People asked me every day, “Do you have Apert syndrome in your family?” The on-call paediatrician who was present during Sarah’s delivery asked Ben and me this question. No, we’d said. It’s not a genetic anomaly that tends to be heritable, unless a person already diagnosed with Apert has a child. In Sarah’s case, as in the majority of those one in 65,000 live births, she landed the genetic lottery. It was a fluke – no scientific explanation. No reason. Just mystery.In the flurry of taking Sarah to diagnostic tests that involved CTs and MRIs, renal ultrasounds, X-rays, blood tests, heart monitors, pulmonary exams, and pre-surgical consultations, I tried to internalise what was happening, both to her and to me. Mostly, my grief unleashed in the middle of the night after I’d fed Sarah and attempted to fall into a fitful sleep. That’s when the tears scaled my cheeks in rivulets. I couldn’t stop myself from sobbing, but it only seemed to happen when I was alone. The anger and confusion morphed into unanswerable questions that infuriated me further: Why did this happen to Sarah? Why does she have to go through so much suffering? What exactly will she have to go through?The injustice of this shocking reality infiltrated my thoughts, as I also wondered what impact my sudden absence would have on our older daughter Felicity, who was nearing age 3 at the time of Sarah’s birth. It tormented me to know I had no viable options – not to stay at home with Felicity and risk losing Sarah, and not to leave every day with Sarah in tow to see doctors while leaving Felicity with our neighbours and friends.Sarah holding a card she made for the author in 2025.Yielding to mystery was not something I’d ever learned to do, so I fought. But the battle was solely internal. I turned against myself. I blamed myself for Sarah’s diagnosis, scoured my memory to find a misstep during my pregnancy that might have caused all of this. After all, my body was her safe haven for nine months, yet I couldn’t keep her safe. It didn’t matter that I never smoked, abstained from alcohol, avoided caffeine, ate whole foods, took my vitamins, attended every prenatal checkup, and rested. I grappled with these gremlins for two solid weeks. Alone. The shame I carried engulfed me into a cave of sadness. I believed I deserved to shoulder this burden by myself, so I did for a long time. When the answers didn’t come – when the longing for Sarah to be “cured” (as if that even made sense) remained unfulfilled – I realised I might go on indefinitely like this. I might become a hardened, embittered woman. My two girls needed me. I needed to share in this strange and unique experience with my husband. And that meant I needed to be fully engaged in the life we had, not the life I wanted for Sarah or Felicity or Ben or me. One day, perched in an armchair next to an east-facing window in our family room, I felt anger swell inside my belly like a beast ready to devour its prey. In that moment, a robin fluttered overhead, which distracted me from my internal misery. As I peered upward, I noticed her alight on a nest full of eggs, and I realised that she, too, was trying to learn how to be a mother to these fragile, delicate species that were a part of her.Oddly, it was the ordinary interruption of a robin that shifted my perspective and alchemised my pain. I wanted then to find a way to raise my daughters to know their worth was not reliant on performance or external beauty, but instead that their value was an inherent quality that did not need to be defended or proved. I wanted then to find a way to raise my daughters to know their worth was not reliant on performance or external beauty, but instead that their value was an inherent quality that did not need to be defended or proved. I wanted to learn to love them as they were, for who they were, without changing anything about them. This meant I had to do the right thing, especially when it was the hard thing: I had to work fiercely as Sarah’s advocate, vying for the best quality of care possible for her to live a full life, while also holding space for Felicity to thrive in her own way and be recognised for her goodness aside from her role as Sarah’s sister.This meant extra doses of love, which honestly did not come easily for me. It still doesn’t. I have not always shown up for my family in the ways they needed most. Felicity is now nearing age 15 and tells me she felt abandoned when Sarah was a baby and I was gone for long stretches of time. Sarah’s now 12 years old and has endured 10 surgeries, the riskiest and most painful of which happened in the first three years of her life. Instead of trying to control or change the way life is, I now try to accept the hardships and ask what they want to teach me about myself. Now, as a mum of five, I can’t ignore or deny the difficult questions that hurt the hearts of my kids. So I don’t. We discuss death and injustice and inequality during everyday conversations. I tell them that there is a lot about life that doesn’t make sense, and that’s OK. I hug them when they cry, tell them they can be mad or sad or confused. A photo of the author's family taken in 2024. Back row from left: The author's husband Ben, the author, and their daughter Felicity. Front row from left: the author's children Auggie, Joey, Veronica and Sarah.Everything is an aspect of the human experience, and Sarah’s life has taught me that the best avenues to personal growth happen in the car rides home from the splash pad after a kid told Sarah her face looked “weird”. On other occasions, its distant synonyms “scary,” “funny” or even “ugly” become a substitute for “weird”.Recently, Sarah asked me if she could participate in what I was sharing about her online. Over the course of many weeks, she read some of my essays and the comments from strangers who responded to the micro-stories about her questions on beauty and acts of kindness. Then she decided to join me in posting short videos, in which she’d share snippets about what having major surgery is like, what it’s like to look different, and how each of us can choose to treat others more tenderly in this world.I think Sarah knows how bruised our society is, because she has experienced its brutalities in more ways than one. She’s had her skull surgically severed in half, and she’s had her emotions decimated by the insensitive remarks and stares of the public, both young and old. Maybe that’s why it’s important to me that we foster a milieu of gratuitous acceptance, love and celebration in our family – because when everything hurts almost all the time, wouldn’t life be more beautiful if we offered even a sliver of light to other broken, wounded people all around us?Some names and details have been changed to protect the privacy of individuals mentioned in this essay.Jeannie Ewing is a published author with a background in school counselling who writes and speaks about grief in motherhood, reclamation of one’s identity in midlife, existential ambivalence, giving ourselves permission to be human, and holding space for our tender needs. She can be found on her website or on Substack.Do you have a compelling personal story you’d like to see published on HuffPost? Find out what we’re looking for here and send us a pitch at [email protected]...'I'm Considering Divorcing My Wife After She Called My Daughter This 1-Word Insult'A Nurse Did The Unthinkable To My Mum As She Gave Birth To My Brother. No One Believed Her, But I'm Here To Warn You.I Had A Painful Secret. I Was Shocked When I Discovered My Friends Had The Same One

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