Sickest Baby in the NICU Thriving After Given 5 Percent Chance of Survival

Five has been an impactful number in Jacoby Hope Arnold’s life.

While she and her twin, Jenna, were still in utero, Cleveland Clinic doctors discovered Jacoby had non-immune hydrops fetalis, a severe, life-threatening condition in which abnormal amounts of fluid build-up in two or more parts in the body of a fetus or newborn.

Jacoby was given a 5 percent chance of making it to live birth, and – if she lived – another 5 percent chance to survive.

Jacoby and Jenna – the family’s second set of twins – were born at 31 weeks, and delivered by Vladimir Burdjalov, M.D., a neonatologist at Cleveland Clinic Children’s Department of Neonatology. Jacoby was immediately rushed to Cleveland Clinic Children’s neonatal intensive care unit (NICU), her body swollen and her chest filling rapidly with fluid.

Cleveland Clinic NICU Jacoby

Jacoby and her twin sister, Jenna, shortly after birth. (Courtesy: Jillian Arnold)

Over the next few hours, and in the ensuing days and weeks, Jacoby endured a number of life-saving procedures, including a tracheotomy and insertion of a chest tube to help her breathe, and two surgeries. A team led by medical director Ricardo Rodriguez, M.D., faced several hurdles that brave Jacoby managed to overcome; altogether, she spent 16 months in the NICU and Cleveland Clinic Children’s Hospital for Rehabilitation before finally going home.

RELATED: After Eight-Month Hospital Stay, Amazing Grace Goes Home

“All the doctors, surgeons, nurses, and respiratory, physical, occupational and speech therapists are truly Jacoby’s guardian angels here on earth,” noted Jillian.

Jacoby with her mother, Jillian, and members of her Cleveland Clinic care team. (Courtesy: Jillian Arnold)

Now, Jacoby and Jenna are – you guessed it – 5 years old. Jacoby is thriving and the Arnold’s want to advocate for the health care needs and rights of all children and urge continual Congressional support for children’s hospitals and the Children’s Health Insurance Program (CHIP), which provides health care coverage to families who earn too much to qualify for Medicaid but not enough to afford private insurance.

Cleveland Clinic NICU Jacoby

Sen. Sherrod Brown, Jacoby’s father, Kevin, mother, Jillian, and Jacoby (left photo); Kevin, Jillian, Jacoby and Sen. Rob Portman (right photo) (Courtesy: Jillian Arnold)

Jacoby accompanied her parents and around 50 similar families in Washington, D.C., to represent children’s hospitals around the country on Speak Now for Kids Family Advocacy Day.

The annual event enables children like Jacoby and their parents to share stories of their health care journey and illustrate how public policy can influence access to health care for all children, and why children’s health should be a national priority.

Jacoby continues making progress after spending 16 months in Cleveland Clinic Children’s NICU. (Courtesy: Jillian Arnold)

As her mom, Jillian, wrote on the family’s Team Jacoby Hope Arnold Facebook page, “I’m praying (dad) Kevin and I, with Jacoby by our side, can be a powerful voice for her, as well as so many other Children and Families that face the daily struggles and challenges that come with having a medically complex child.”

Jacoby has taken amazing steps towards being able to walk independently. (Courtesy: Jillian Arnold)

Now ventilator-free for over a year, Jacoby is breathing on her own and has shed the braces she once required to help her walk. Her parents are amazed by her progress, and hope all other medically-challenged children receive the necessary care.

“We are very blessed and honored to have this incredible opportunity to share Jacoby’s powerful journey of her ultimate fight to live, even with all the odds stacked against her,” added Jillian.

Follow @CleClinicNews on Twitter for the latest stories on inspiring patients, medical innovation and breakthrough research.