What happened to Lauren Cummings Johnson's daughter? Citrullinemia struggle explored as influencer mourns loss of 9-month-old infant

Nursing influencer Lauren Cummings Johnson and her husband, Wilson Johnson, shared a heartbreaking joint Instagram post on April 7, mourning the loss of their nine-month-old daughter Lily Ann. The couple said their daughter passed away the day prior, on April 6.

Lily Ann, born on July 6, 2024, faced certain health complications following her birth. She had to stay in the hospital for a month. Lauren wrote in an Instagram post on February 7 this year:

"Lily Ann was born with a condition where she cannot break down protein. She is missing a critical enzyme in the urea cycle."

In the months leading up to Lily Ann's death, the baby was seen with a nasogastric tube in Lauren and Wilson's Instagram posts. Lauren explained:

"It was critical for her get a specific amount of calories so her body didn’t breakdown her own muscles for protein. It allowed access for immediate food and medications delivery."

Lauren Cummings Johnson said her daughter could not directly feed from bottles by mouth despite months of "feeding therapy". Thus, the doctors inserted a G-tube into Lily Ann's stomach in December.

In the post, made during the "Feeding Tube Awareness Week", Lauren expressed gratitude for these resources for helping Lily Ann.

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Lauren Cummings Johnson and Wilson Johnson mourn their daughter Lily Ann's death after Citrullinemia battle

Following Lily Ann's untimely demise, Lauren Cummings Johnson and Wilson Johnson called their daughter:

"9 months our beautiful miracle, 9 months of a love, joy, and sunshine in our home and hearts."

Lauren and Wilson kept their faith in the "Heavenly Father" and hoped for their daughter's safe journey to heaven. They wrote:

"His ways are higher and better than ours, even when we don’t understand it. He blessed us every single day for the past 9 months and we will never be the same."

The bereaved parents called it an "honor of our lifetime" to have been able to share Lily Ann with the world. Lauren and Wilson acknowledged everyone who prayed for Lily Ann's health.

Describing the nine-month-old baby as "pure joy and sunshine", the couple wrote:

"We always said she was a real life angel What a blessing it was to be her mom and dad. Thank you Jesus and thank you Lily Ann for changing our lives forever!"

The post ended with a quote by the late pastor Timothy Keller. The couple did not disclose Lily Ann's exact cause of death.

Lauren addressed Lily Ann's health struggle with her Instagram followers last year. At the time, the influencer revealed Lily Ann's Type 1 Citrullinemia diagnosis, confirmed by a geneticist, which led the infant to undergo hospice care for a while.

Medline Plus described Citrullinemia as "an inherited disorder that causes ammonia and other toxic substances to accumulate in the blood." Type 1 of this disorder is commonly discovered within the first few days after the affected child is born.

Describing Lily Ann's Type 1 Citrullinemia, Lauren Cummings Johnson wrote on her Instagram Stories last year:

"A rare autosomal recessive genetic disorder CTLN1 caused by deficiency or absence of the enzyme argininosuccinate synthetase (ASS)."

The nursing influencer told her followers about Lily Ann's diagnosis last year. (Image via Instagram/@choosejoygivegrace)

Lauren Cummings Johnson told her followers Lily Ann's condition would be a "lifelong battle". After the nine-month-old's death last week, the couple's Instagram post was flooded with thoughts and prayers from everyone who followed Lily Ann's journey till now.