Daniel Alan Fu

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Daniel (Danny) Alan Fu (also known as “Little D”, “Bubby”, and “Buster”) was born on November 10, 2020 at 6:21 am at Community North Hospital weighing 7 lbs. 2 oz. and 20 inches long. We were so excited to meet our beautiful baby boy! Before we got to hold him, our joy quickly transformed into horror when he did not breathe after his birth. He was quickly intubated (i.e. tube down his throat to help him breathe on a machine) and whisked away to the NICU (neonatal intensive care unit). A few hours later his NICU neonatologist delivered the devastating news – Danny most likely had a very serious and rare condition called autosomal recessive polycystic kidney disease (ARPKD). This disease affects only 1 in 20,000 babies (0.005% of the population) and occurs when a baby inherits a mutated gene from each parent (who do not have the disease but are silent “carriers” of the gene). It can vary widely in severity depending on complex genetic factors, but always involves the formation of fluid-filled sacs (cysts) in the kidneys, which will eventually progress to end-stage renal disease, leading to the need for dialysis and potentially kidney transplantation, and can affect other organs (including the lungs and liver). Thirty percent of babies with ARPKD do not survive, usually due to pulmonary insufficiency (poorly developed lungs). Damon and I struggled to comprehend and absorb this shocking information, as there had been no indications of any abnormalities during my pregnancy (including a normal 20 week detailed anatomy ultrasound and non-invasive prenatal chromosomal testing).

We hoped and prayed Danny would not have the most severe version of the disease, and poured our energy into getting Danny the best possible care. At his neonatologist’s recommendation, he was transferred to Riley Children’s Hospital that afternoon for access to a specialty neonatology nephrology team. He was hooked up to so many tubes, wires, and complex equipment and he required such a large team for the transfer that it looked like he was being prepared for a trip to the moon. Underneath it all, he was still our beautiful baby boy, and we tried to make sure he knew he was loved by holding his head, feet, and hands (as we could not hold his body due to the intubation) and talking to him gently as much as we could.

Danny bravely endured many hardships during his first several days in the world with few complaints and a good attitude, just like his father. I was so proud of his lovely little personality and sweet temperament. Even while intubated and hooked up to multiple tubes, he loved to hold on to my finger and listen to my voice as I read and sang to him. Favorite songs were “Stand by me” (Mommy and Daddy’s wedding first dance song) and “Twinkle Twinkle Little Star” and favorite books were “Goodnight Moon” and “I’ve Loved You Since Forever”. He usually calmed quickly after being “messed with” by the amazing NICU nurses, who watched him closely and delivered his extraordinarily complex care with both efficiency and compassion.

Little did we know that the nightmare had only just begun. Despite intensive intervention from multiple specialists, his condition continued to deteriorate. The swelling of his whole body (especially his belly and head/face) became worse and worse and his belly grew larger and larger due to his kidney failure and his giant, cyst-filled kidney size (Danny’s tiny belly held kidneys as large as 8.5 cm, only slightly smaller than full adult kidneys which are 12 cm). However, the most life-threatening aspect of his condition was his continued poor lung functioning, and he had to be switched to a type of ventilator called an oscillator, as well as starting on steroid treatment to try to improve his lungs. Although these were necessary treatments to try to save his life, Danny over time communicated to me and the team through body language and his vital signs that he was experiencing these treatments as torture. I watched in horror and helplessness as he appeared to silently scream during some treatments while flailing his arms with surprising strength and his swollen eyelids bulged in agony; he could no longer be soothed by my voice or touch and he required increasing amounts of strong sedating medication. He suffered so much.

Danny’s treatment team gradually prepared us for the worst during this time; the words of his doctors rang in my hears “We are worried, we are worried, we are worried…”. Still, I prayed desperately for God to save him. The inevitable but unbelievable truth of the situation slowly sank in: Danny’s lungs would never be compatible with life. His ARPKD was quite severe – his kidneys likely had functioned poorly even in utero so that he did not make sufficient amniotic fluid for adequate lung development. No treatment could save him. The devastation hit us in powerful waves.

Our precious baby boy, sweet Daniel, suffered more in his short time in the world than anyone should ever experience. He tried to endure, but it was too much and he had not responded in a meaningful way to all of the possible treatment options. After reading him letters of love from us and other family and friends, introducing him to his grandparents, Uncle Fritz, and Aunt Connie via Facetime, playing him his first songs (including “Daniel” by Elton John), and holding him for hours, he passed away peacefully in my arms on the evening of November 21.

While the intensity of the grief is often unbearable, Damon and I remain strong for each other and we will somehow endure. We continue to be carried by the kind words and gestures of family, friends, and colleagues. Danny touched many lives during his brief and precious life, and we want his memory and his legacy to continue. For those who want to support our family, we ask that you please donate to the March of Dimes in his memory in lieu of flowers or other gifts so that Danny can help as many babies as possible. Please help us transform our grief and profound loss into something positive. So much was robbed from Danny (he will never know what it feels like to laugh, or eat, or feel the sunshine on his face), but I know in my heart he was a good soul who would want the chance to help others. Inspired by his spirit of compassion and love, please consider making a donation in his memory to: The DANNY Fund for Babies in Need (March of Dimes): charity.gofundme.com/team-dannyfu