Amy Hallemann Mallen 的照片
已籌集:$94,003?USD · 目標:$100,000?USDinfo-solid
We were so relieved when our baby was finally given a clear diagnosis. Unfortunately, it was that of a rare and terminal syndrome.
Yes, we are devastated. Yes, we are mourning the loss of our child daily. Yes, we would do anything possible to change the circumstances. It may seem inconceivable to find relief in such a diagnosis, but it finally gave us some answers.
After an amazingly easy pregnancy, Amy had Atlas at 11:49pm on October 1, 2017. We should have known that after 9+ months of everyone saying we were so lucky that Amy wasn't sick, too tired, etc. things were too good to be true. After an extremely long and traumatic labor, Atlas was taken to NICU at Piedmont Hospital. At that point, we didn't expect anything to be seriously wrong-just routine monitoring for sepsis due to meconium in his lungs. However, things changed quickly when our doctors became suspicious that something bigger was going on wit...h our baby boy. We ran every test imaginable, and learned that Atlas had several issues-congential cataracts, moderate hearing loss, agenesis of the corpus callosum, feeding issues, the list goes on... However, the doctors weren't too worried about the prognosis. We all just wanted to get Atlas home, and ready for his various specialty follow ups.
On October 26th, Atlas was finally able to come home, and we felt like we were able to start our life as a family. Putting Atlas in his own clothes, giving him a bath in an actual bathtub- these suddenly felt like luxuries. While Atlas did have an NG tube for feeding issues, this became our new normal, and we learned to adjust. It was surreal, but completely manageable.
One month after Atlas came home, our night nurse woke us up in the middle of the night to let us know that Atlas had a fever of 102.6 degrees Fahrenheit. As he was less than two months old at the time, this was a very big deal. A 1am trip to the ER began our two month saga of continuous hospital care, lab tests, X-rays, tears. In the hospital for what turned out to be a UTI (after full spinal tap and workup)...out for several for what was thought to be a stomach bug... out for a for continued throwing up and placement of an NJ tube...out for two days. Then the big hospital visit happened that changed everything.
On December 18th, after being discharged from the hospital two days prior, Atlas went to a previously scheduled therapy appointment. His therapist was immediately concerned about his labored breathing. After hooking him up to a PulseOx, we found out that he was only at about 77% oxygen saturation. We immediately rushed to the emergency room, where CHOA's incredible pulmonary team made sure Atlas was a priority and admitted us to their care. Over the course of the five week stay that followed, Atlas had a full work-up: ENT scope, circumcision, tubes placed in his ears, GJ tube placed in his stomach/intestine, heart echo, MRI, swallow study, upper GI exam, renal ultrasounds, chest X-rays, urinalysis, thyroid tests, countless blood draws. It was during this stay that we also asked to loop in genetics. While the NICU at Piedmont had run a microray that showed everything to be normal, we knew there had to be a bigger picture. Atlas had way too many things going on for it not to be connected in some way. We were initially told not to have high expectations; only about 36% of children that are suspected to have some sort of genetic issue are ever actually diagnosed. By the next morning Atlas' (presumed) diagnosis was in his chart; our precious baby boy has Vici Syndrome. While it was only suspected that day, the genetic confirmation we received over a month later was some of the best news we could have received at that point.
It turns out the geneticist we met with is probably the only person in Atlanta to ever even have heard about this extremely rare syndrome. There are only about 60 cases ever recorded in history worldwide, and it was only discovered thirty years ago. The syndrome comes with a terminal prognosis, with most of the children passing away from their immunodeficiency, cardiomyopathy, or a combination of the two. While we are completely devastated, we were also so grateful to finally have an answer, a general path to expect. The four months we spent with no answer were the worst in our lives. With a diagnosis, we were finally able to enjoy our time with Atlas, and not be so focused on back to back doctors' appointments, therapies, tests. We now know that we can utilize IVF with PGD for future children, and won't be gambling with their health. We've connected with families who had more children before finding out their kids had Vici. Some of them have had the unfortunate chance to have second kids with the genetic disorder. We feel so lucky to have the knowledge that we do. Hospice was looped in, and our incredible team was meeting with us weekly, walking us through everything, providing the most amazing insight into this world we never thought we'd find ourselves being a part of.
Atlas ultimately ended up passing away peacefully at home on June 17, 2018, as a result of kidney failure.
We are so happy to have chosen Atlas' name before meeting him. Atlas is notorious for holding the weight of the heavens. We chose this name partly to honor all of our angels in heaven. How ironic that we chose the name of the strongest titan in Greek mythology for our son, who is weak in so many (physical) ways. He has more than made up for it in so many aspects. We are so appreciative of what he teaches us every single day.
Because Atlas had so many different health-related issues, we have decided to direct donations to palliative care, rather than a specific medical branch. After we learned that it was suspected that Atlas had Vici Syndrome, our palliative care and hospice teams have been the glue holding us together. They've had to endure the truly hard conversations about Atlas' DNR, funeral plans, etc. We are eternally grateful, and will never forget them. We have named an area at the new Center for Advanced Pediatrics after Atlas, with plans to do the same at the future North Druid Hills campus.
Thank you so much for contributing to our AtlasStrong efforts. We are so determined to turn our devastating situation into a positive and benefit future patients at CHOA in honor of our sweet angel baby.
當我們的寶寶終于得到明確的診斷時, 我們感到寬慰. 不幸的是, 這是罕見的晚期綜合癥.
是的, 我們被摧毀了. 是的, 我們每天都在哀悼失去我們的孩子. 是的, 我們會盡一切可能改變情況. 在這樣的診斷中找到安慰似乎不可思議, 但最終給了我們一些答案.
經過一次令人驚訝的容易懷孕后, amy在2017. 年十月1日下午11:49點有了阿特拉斯. 我們應該知道, 經過9多個月的每個人都說我們很幸運, 艾米沒有生病, 太累 等等等等. 事情太好了, 不可能是真的. 經過一次極其漫長和創傷的勞動后, 阿特拉斯被帶到皮德蒙特醫院的重癥監護室. 那時, 我們沒有想到有什么嚴重的錯誤只是由于肺部內的meconium而對敗血癥的例行監測. 然而, 當我們的醫生懷疑我們的寶貝兒子發生了更大的事情時, 事情發生了很快的變化. 我們每測試個可以想象, 了解到阿特拉斯有幾個問題... 先天性白內障, 中度失聰, 體質的形成, 進食問題, 清單還在繼續... 然而, 醫生們并不太擔心預后. 我們都只是想把阿特拉斯帶回家, 并為他的各種專業做好準備.
十月26日, 阿特拉斯終于能回家, 我們覺得我們可以開始作為一個家庭的生活. 把阿特拉斯穿上自己的衣服, 讓他在一個真正的浴缸里洗澡這些突然感覺就像是奢侈的東西. 雖然阿特拉斯確實有一個ng管子用于喂養問題, 但這成為了我們的新常態, 我們學會了調整. 這是超現實的, 但完全可以管理....
阿特拉斯回家一個月后, 我們的夜班護士半夜叫醒我們, 讓我們知道阿特拉斯有102.6華氏102.6度的發燒. 因為他當時還不到兩個月, 這是一個很大的事情. 上午1點到急診室之旅開始了我們兩個月的持續醫院護理, 實驗室測試, x光, 眼淚的故事. 在醫院里, 原來是uti (經過脊髓完全敲擊和鍛煉后)... 出去幾天... 被認為是胃蟲... 出去一周... 為了繼續吐和放置一個nj管... 出去兩天. 然后大規模的醫院訪問發生, 改變了一切.
十二月18日, 在兩天前出院后, 阿特拉斯前往一個預定的治療預約. 他的治療師立即擔心他的呼吸困難. 在把他鉤上一個脈沖星后, 我們發現他的氧氣飽和度只有77 %左右. 我們立即趕到急診室, choa的令人難以置信的肺部團隊確保atlas是一個優先事項, 并讓我們接受他們的照顧. 在接下來的五個星期里, 阿特拉斯進行了一個完整的工作: 耳鼻喉部, 割禮, 放在他的胃/腸道的gj管, 心臟回聲, mri, 燕子學習, 上gi考試. 腎超聲, 胸部x光, 小便分析, 甲狀腺測試, 無數的血液抽出. 正是在這次逗留期間, 我們還要求在遺傳學方面進行循環. 雖然皮德蒙特的重癥監護室運行了一個微射線, 顯示一切正常, 但我們知道必須有一個更大的畫面. Atlas有太多事情發生, 不能以某種方式連接. 我們最初被告知不要抱有很高的期望; 只有大約36 %的懷疑有某種遺傳問題的兒童實際上被診斷出來. 到了第二天早上, 阿特拉斯的診斷已經出現在他的圖表中; 我們的寶貝男孩患有vici綜合癥. 雖然只是在那天被懷疑, 但我們一個多月后收到的基因確認是我們當時可能收到的最好的消息.
原來我們遇到的遺傳學家可能是亞特蘭大唯一聽說過這種極為罕見的綜合癥的人. 全世界歷史上只有大約60個病例, 而且是在三十年前才發現的. 該綜合癥伴隨著末期預后, 大多數兒童從免疫缺陷, 心肌病或兩者的結合去世. 雖然我們完全崩潰, 但我們也非常感激終于有了一個答案, 一條可以期待的總的道路. 我們度過的四個月沒有答案, 是我們生活中最糟糕的. 有了診斷, 我們終于能夠享受atlas系統的時光, 而不是那么專注于背靠背的醫生的預約, 治療, 測試. 我們現在知道, 我們可以為未來的孩子們使用ivf與pgd, 不會用他們的健康賭博. 我們已經聯系到了更多孩子的家庭, 然后才發現他們的孩子有vici. 其中有些人不幸有機會生下基因障礙的第二個孩子. 我們感到非常幸運, 有我們所做的知識. 臨終關懷中心被包圍, 我們令人難以置信的團隊每周與我們見面, 帶領我們走遍一切, 提供了我們從沒想過的世界的最令人驚嘆的洞察力.
由于腎衰竭, 阿特拉斯最終在2018年六月17日在家中平靜地去世.
我們很高興在見到阿特拉斯之前選擇了他的名字. 阿特拉斯以持有天國的重量而臭名昭著. 我們選擇這個名字部分是為了紀念我們在天堂的所有天使. 多么諷刺的是, 我們為我們的兒子選擇了希臘神話中最強大的泰坦的名字, 他在很多(身體)方面都很虛弱. 他在很多方面都彌補了. 我們非常感謝他每天教給我們的東西.
由于atlas系統有很多不同的健康相關問題, 我們決定把捐款直接用于緩解護理, 而不是一個特定的醫療部門. 當我們得知阿特拉斯被懷疑患有vici綜合癥后, 我們的緩和護理和臨終關懷團隊一直是把我們團結在一起的膠水. 他們不得不忍受關于atlas的dnr, 葬禮計劃等真正艱難的談話. 我們永遠感恩, 永遠不會忘記他們. 我們以阿特拉斯的名字命名了新的先進兒科中心, 并計劃在未來的北德魯伊山校園也這樣做.
非常感謝您為我們的atlasstrong努力做出的貢獻. 我們如此決心把我們的毀滅性狀況變成一個積極的, 并造福未來的病人, 以紀念我們的天使寶貝.

Amy Hallemann Mallen ? 2019年2月7日

This is just wonderful. Thank you, Amy and friends, for helping bring hope to our hospitals!

Children's Healthcare of Atlanta
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