By all accounts everything was perfect when our twins, Raphael and Antonia, were born on Feb 15, 2024. <img src="https://d2g8igdw686xgo.cloudfront.net/78564493_1709054036105984_r.jpg" alt="Image" width="100%" media_type="3" /> The next morning, everything changed. This story has a happy ending, but bear with me while I tell it … During their first morning routine check up, a nurse heard a murmur in Raphael’s heart. Our pediatrician assured us this happens often, and though it would likely resolve within a few days, he wanted to get a scan of his heart just to be safe. I was holding Raph’s little hand while he got his scan, when I saw the tech pause, and then say to me, “I need to go talk to the Doctor.” <img src="https://d2g8igdw686xgo.cloudfront.net/78564493_1709054035239320_r.jpg" alt="Image" width="100%" media_type="3" /> The next 30 minutes were the most terrifying of my life. We discovered that Raphael was born with a number of congenital heart defects, including: Interrupted Aortic Arch: IAA is an extremely rare condition where the aorta doesn’t form correctly, and occurs in only 0.002% of all newborns. A ventricular septal defect: VSD is a hole in the wall that separates the two sides of the heart. VSD happens in about one-third of 1% of all newborns. <img src="https://d2g8igdw686xgo.cloudfront.net/78564493_1709054034671110_r.jpg" alt="Image" width="100%" media_type="3" /> We went from the most joyous day of our lives, welcoming our beautiful twins, to the worst day of our lives, worrying if Raphael would survive. 

 We only had him with us for 24 hours before he was rushed to the NICU to get him on medicine that would keep him alive, and once he was stabilized, transferred to the Cedars Sinai Pediatric ICU. <img src="https://d2g8igdw686xgo.cloudfront.net/78564493_1709054035831509_r.jpg" alt="Image" width="100%" media_type="3" /> On Thursday Feb 22nd, one week after he was born, Raphael underwent a complicated, life-saving, 10h open heart surgery. The surgery was ultimately a success. His doctors were able to fix everything in his heart, and he won’t require any subsequent surgeries. 

 <img src="https://d2g8igdw686xgo.cloudfront.net/78564493_1709054035394696_r.jpg" alt="Image" width="100%" media_type="3" /> There were though, a number of complications during the procedure, making it both very long, and very hard on his little body, and his little heart that’s just the size of a walnut. As a result, Raphael exited the surgery on a heart machine (called ECMO), in addition to being on a breathing tube, and because he is so small, with his chest cavity still open. <img src="https://d2g8igdw686xgo.cloudfront.net/78564493_1709054036195360_r.jpg" alt="Image" width="100%" media_type="3" /> On Monday morning, Feb 26th (which also happened to be my birthday), Raphael underwent a successful procedure to take him off the heart machine…the present I could ask for :)
 <img src="" alt="Image" width="100%" media_type="3" /> Everyone is thrilled with his progress. They hope to close his chest this week, and he will almost certainly go on to live a long and healthy life being extremely handsome and bugging his 1 minute older sister (who has undergone many tests, and is perfectly healthy, other than at times looking like an angry old man).
 <img src="https://d2g8igdw686xgo.cloudfront.net/78564493_170905403688195_r.jpg" alt="Image" width="100%" media_type="3" /> Raph <img src="https://d2g8igdw686xgo.cloudfront.net/78564493_1709054033978670_r.jpg" alt="Image" width="100%" media_type="3" /> (Toni) Throughout the darkness of this nightmare, we’ve been blessed to witness the incredible humanity of his amazing healthcare team, and the miracle of modern medicine. 
 So what’s next? Due to the extent of his heart defects, and the intensity of his surgery, the doctors are projecting his recovery will be 4-7 weeks in the Pediatric ICU. I’ll be taking a significant step back from work to manage Raphael’s care and recovery, which will of course impact our household income, while our costs balloon. <img src="" alt="Image" width="100%" media_type="3" /> As of this writing, we’ve already incurred $27,000 in out-of-pocket costs relating to fertility, Claire’s pregnancy, and their birth, and now will be adding significantly on top of that figure.   We’re launching this GoFundMe to help support our family through Raphael’s recovery, and to offset our related expenses.
 This includes things like medical bills, ongoing care, expenses relating to me spending every day at the hospital, food, Ubers, postpartum and mental health care, and any other unforeseen costs on Raph’s road to recovery. 10% of all funds raised will be donated to the Guerin Children's Pediatric Intensive Care Unit (PICU) Fund, and the amazing doctors, surgeons and nurses that saved our son’s life. Our family would not be as strong as it is without all the love and support (and Doordash gift cards!) we’ve already received from our community. <img src="https://d2g8igdw686xgo.cloudfront.net/78564493_1709054035606340_r.jpg" alt="Image" width="100%" media_type="3" /> Anything you’re able to offer - whether it’s dollars, prayers, sharing this campaign - makes an impact larger than you know. Thank you, thank you, thank you. Love, Ashley, Claire, Raphael, Antonia, and Phoebe (the cat.) <img src="https://d2g8igdw686xgo.cloudfront.net/78564493_1709054033902172_r.jpg" alt="Image" width="100%" media_type="3" /> L Raphael; R Antonia <img src="https://d2g8igdw686xgo.cloudfront.net/78564493_1709054035355710_r.jpg" alt="Image" width="100%" media_type="3" /> Raph <img src="https://d2g8igdw686xgo.cloudfront.net/78564493_170905403493842_r.jpg" alt="Image" width="100%" media_type="3" /> Toni Guerin Children's Pediatric Intensive Care Unit
(PICU) Fund Guerin Children's Pediatric Intensive Care Unit (PICU) is a
12-bed state-of-the art unit that provides intensive and acute care to Cedars-Sinai’s most ill surgical and medical pediatric patients. Each year, over 400 critically ill or injured infants, children and adolescents in the PICU receive comprehensive
care for conditions that are life-threatening or require constant monitoring. The PICU provides a healing environment where patients receive the most urgent and highest level of medical care they need.
 About Guerin Children's
 Cedars-Sinai was named the #2 hospital in the nation and #1 in California in U.S.
News &amp; World Report's "Best Hospitals 2022-23" rankings, At Guerin Children's, we bring the extraordinary dedication, skill, expertise, innovative treatment options, and leading-edge technologies and facilities that we are known for to the care of infants, children and adolescents. We are proud to provide a continuum of primary and specialty care for hospitalized patients and outpatients in addition to trailblazing pediatric research, and forward-looking physician education and training.

Megan Truth

Audrey Bellis

Gesche Nemitz

Caity Tully

Anonymous

Nicole Nichols

Bernadette Spear

Megan Wright

Joshua Neckes

Sushma Iyer

Charles Tsou

Jessie Mansperger

❤️ Raphael’s Heart Surgery Recovery Fund ❤️

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