Ethermac Exchange-'She just needed a chance': How a Florida mom fought to keep her daughter alive, and won

Most doctors said her baby,Ethermac Exchange who would be born without kidneys, had no chance to survive. But Andi Mahoney said she refused to accept that fate, and her now 2-year-old daughter Emmie's fight against the rare and often fatal condition is living proof of the power of perseverance, faith and science.

Their journey began in November 2020 when Andi Mahoney went to the doctor's office for her 20-week scan. The scan showed her baby had bilateral renal agenesis, meaning she didn't have kidneys, an extremely rare condition that is often fatal, said Dr. Rueben Quintero, with the Fetal Institute in Miami.

"Only about 0.013% of cases in America (are diagnosed each year)," Quintero said. "The reason it's impossible to survive the condition is because the baby has no fluid. Since they have no kidney to pee, they are not swallowing any fluids like they are supposed to."

Mahoney said she searched for weeks before she found Quintero and quickly made plans for the six-hour drive from Jacksonville to Miami. Because the condition also prevents the baby's lungs from developing, the baby's survival relied on Mahoney getting infusions of fluids for 10 weeks.

"I kept traveling to Miami to get more, to keep Emmie alive," Mahoney said. "My baby needed fluid to breathe. By the time I got to the 34-week mark, I had an unnatural rupture,"

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'They gave me hope'

At that point, Mahoney said she had to think fast and find a hospital to deliver her child and keep her baby alive. She found a Stanford, California hospital that had experience helping mothers give birth to babies with bilateral renal agenesis.

"I hopped on a flight from Jacksonville to California with my membranes ruptured," Mahoney said. "I wanted to go somewhere that would deliver me my Emmie. Also, they gave me hope that she would live."

Emmie was born on March 24, 2021, as doctors were around her giving oxygen, helping her fight for her life, Mahoney said. Mahoney said she thanked God her journey led her to that moment - while other doctors told her that Emmie had no chance at living, the doctors at Stanford Hospital believed.

"I didn't get to meet her until after she had surgery," Mahoney said. "I did not know if she could survive after the first day. It was a lot of waiting and praying."

But the journey wasn't finished. Emmie's lungs were very underdeveloped and there were scary moments that she overcame. Emmie also still needed a kidney and was unable to leave the hospital until she was 6 months old.

Once she left the hospital, Emmie went to Jacksonville with her sisters and parents. Emmie couldn't stay for long because she needed to stay on dialysis to stay alive. Emmie arrived at Children's Healthcare of Atlanta with one of her parents for treatment. A few weeks later, her family relocated to the city to be nearby as she went through the process.

Once in Atlanta, Emmie was able to do two years of outpatient dialysis where she can do at home.

Emmie still needed a kidney donor, or she wouldn't have a chance of staying alive. 

"I received the best news of my life when I found out we had matching blood types and that I was approved for the surgery," Mahoney said. "I didn't think twice. I knew I was giving my kidney to Emmie."

Emmie stayed on dialysis until she was 30 months old, when doctors at Children's Healthcare of Atlanta finished the procedure on July 25th, 2023.

"We named her Hope before I even knew I would have to go through this journey," Mahoney said. "This is amazing. She was such a happy child that she just needed a chance. I am so thankful to the Lord and the doctors he chose for me."

The Mahoney family also wants to encourage others to become kidney donors. 

What is Bilateral renal agenesis?

Bilateral renal agenesis (B.R.A.) is a rare and severe condition that occurs when the baby's kidneys fail to develop. The kidneys filter waste out of the body and regulate the fluid balance. During the later stages of pregnancy, the kidneys also produce amniotic fluid surrounding the baby. As a result, B.R.A. can limit the baby's lifespan and cause severe complications.

According to the Minnesota Department of Health, 40% of babies diagnosed with bilateral renal agenesis are stillborn. If born alive, they typically survive only a few hours.

How do I donate a Kidney?

Donating a kidney allows the recipient to live a life free of dialysis and helps improve their quality of life. This unselfish act is often done for a relative, loved one, or friend and can make a significant difference in their life.

Although a healthy identical twin is the best donor, advancements in medical science have made it possible for many people, including family members or non-relative, to donate. Medications prevent the recipient's body from rejecting a less-than-perfectly-matched kidney.

When you connect with a transplant center, they will screen you for any medical conditions that could disqualify you from donating. This includes a health questionnaire and a blood test to determine compatibility with the recipient.

It's also important to consider the availability of testing, surgery, and recovery time. Additionally, assessing the financial strain caused by the time off is crucial, and ensuring they have support for transportation, meals, and doctor's visits during recovery.