Early in the pregnancy, Andi and Ryan Mahoney chose the middle name “Hope” for their third daughter, Emmie.
“It was before we ever knew what hope would mean for us,” said Andi Mahoney.
Before a routine scan at 20 weeks of pregnancy revealed Emmie was missing both kidneys, an extremely rare condition with little to no hope for survival.
Before experimental treatments during the pregnancy to help improve the baby’s odds.
Before the morning of March 24, 2021 in a delivery room when both mother and father held hands, anxiously waiting to see if their baby could take her first breath.
“I kept saying ‘Jesus’ and praying,” said Andi Mahoney.
“It was the most surreal moment of my life. I was like: ‘Am I meeting my baby or losing my baby?’”
Emilia “Emmie” Hope arrived a few weeks early, weighing 5 pounds, 7 ounces. And even before mom and dad could see baby Emmie that spring morning, they heard her: a soft cry. That meant Emmie was breathing.
Emmie was a medical marvel. But she still faced a precarious journey, an intense care plan that included a complex, daily dialysis regimen. Emmie also couldn’t live on dialysis forever. She needed a real kidney, and that meant a kidney transplant.
Credit: HYOSUB SHIN / AJC
Credit: HYOSUB SHIN / AJC
These two years, nine months since her birth have also been a time of many gifts. Always a happy baby, Emmie is now a sweet, smiley toddler, a testament to tenacity, faith, science — and hope.
In July, Emmie finally received a kidney — from her mom. She is now home with her parents and older sisters, and celebrating her first Christmas without the need for a life-sustaining dialysis treatment lasting up to 14 hours.
The season has been filled with family time — baking cookies, singing carols, and participating in an Advent Bible study.
“When I look back on this journey, there are so many miracles God had to perform for Emmie to be here,” said Andi Mahoney.
Refusing to give up
The absence of one kidney is fairly common, affecting 1 in 1,000 newborns. But “bilateral renal agenesis,” where both kidneys are missing, is far more rare, occurring in only about one in every 4,000 to 7,000 pregnancies.
The condition makes survival of the infant after birth unlikely, and can cause the pregnancy itself to fail. The number of successful births is small — only about about a dozen babies in the U.S. with this condition are known to have survived.
But Andi Mahoney said she couldn’t give up.
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Credit: custom
“Our thought all along was that if God takes her, then that’s it. Our palms are up. We accepted that, but we have to know we did everything in our power to try and save her,” said Mahoney. “I was like, ‘Lord, if this is not your will, shut these doors so I can’t walk through.’ And one door was always open. It was always wide open.”
Kidneys are responsible for removing waste products and excess fluids from the body. They also regulate blood pressure, maintain calcium balance in the body, and play a role in the production of red blood cells.
For a fetus developing without kidneys, the pregnancy is complicated by a shortage of essential amniotic fluid. Amniotic fluid is more than just a liquid the fetus floats in. The fluid contains nutrients, hormones, antibodies, and other essentials to keep the fetus healthy and protected. At first in a pregnancy, amniotic fluid consists of water from the mother’s body, but gradually a larger proportion comes from the baby’s developing kidneys, which add fetal urine to the amniotic fluid.
Having too little amniotic fluid can cause the baby to be born with severe abnormalities, including underdeveloped lungs. This is because amniotic fluid plays an essential role in lung development. The unborn baby “breathes” the fluid into their lungs, where it pushes open the air sacs and stimulates them to grow. Until recently, babies born without kidneys and the accompanying shortage of amniotic fluid also suffered from severely underdeveloped lungs. They quickly suffocate, unable to breathe.
Mahoney, whose family was living in Florida early in her pregnancy, learned about a clinical trial at Johns Hopkins testing how saline infusions into the womb might help babies with missing kidneys survive long enough after birth for dialysis to begin. She was not accepted into the trial but found a doctor in Florida who was willing to do the infusions.
At about a month before her due date, Mahoney went into labor. She had planned in advance to deliver at Stanford Medicine children’s hospital in California where doctors have experience delivering babies like hers.
“Our thought all along was that if God takes her, then that's it. Our palms are up. We accepted that, but we have to know we did everything in our power to try and save her."
The hospital system was also pioneering a special ultrafiltration device to help keep these small babies alive and growing until they were large enough to be transitioned to a more widely used type of dialysis that could be administered at home.
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Credit: custo
Until recently, there weren’t even catheters small enough to use on babies that small, let alone medical devices designed for newborns. There were many frightening moments but Emmie overcame them. At about six months of age, she was stable enough to have her care transferred to Children’s Healthcare of Atlanta where she was put into a pediatric transplant program, one of the country’s leading pediatric transplant programs. The program would put the entire family on a path to not just try to keep Emmie alive, but to give her the hope of a full life with a future. The Mahoneys decided to resettle in metro Atlanta to be closer to Children’s.
Dr. Rouba Garro, a nephrologist and medical director of the kidney transplant program at Children’s, received a photograph of Emmie taken by her mom as she was being loaded into an air ambulance for the trip to her new “home.” Garro was there when Emmie arrived, and was immediately struck by her personality.
“She has the most beautiful smile, and even at six months of age she was able to connect with you,” said Garro. “I was thinking that I wanted to be able to provide the best care for her and see her reach her ultimate goal, which is a transplant, and do that successfully. The other thing I knew was we would have a long journey ahead of us.”
At Children’s, Emmie received care from multiple specialties: urology, pulmonology and even music therapy were needed while she waited for a transplant.
She had regular doctor appointments and many hospital stays. Most of the time, Emmie was well enough to be monitored and have dialysis at home.
By the summer of 2022, after a series of tests, it was determined Emmie’s mother was a good transplant match for Emmie and healthy enough to donate one of her kidneys.
Emmie then just needed to be big enough — at least 22 pounds — to undergo the transplant surgery. At that point, she would be the size and age children need to be in order to receive an adult-sized kidney.
When Emmie was close to 2 years of age in the fall of 2022, she was ready to receive her kidney transplant, but the surgery was rescheduled three times due to her serious health complications: First, a hernia obstruction needed emergency surgery; then severe obstructive sleep apnea; and then an infection that sent Emmie into septic shock.
“Everybody is in love”
Even when Emmie was sick in the hospital, she remained upbeat. Her family would host dance parties in her hospital room and even on difficult days, Emmie would sit up in bed, rock back and forth and tell her mom to sing the “ponytail song,” by Badnamu Pop, an animated series of songs for preschoolers.
You know I look good I got a ponytail I got a ponytail I got a p-p-p-p-p-p-p-p-ponytail
“Everybody is in love with Emmie,” said Garro. “She has one of the most special personalities I have ever seen in a baby. Even when she would be in the hospital and sick and in pain, she would make sure she spread her love around, and interact in a way with you with her eyes.”
Finally, on July 25, after nine months of delays, Emmie received one of her mom’s kidneys. The surgery went smoothly and the new kidney started working immediately, according to Garro.
Garro said she’s thrilled to see Emmie off dialysis and reaching developmental milestones. From eating new foods, taking her first steps, and saying new words, Garro said “She is really happy and thriving.”
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Credit: custom
Credit: custom
Credit: custom
Emmie still has many challenges ahead. She gets lab work done every week and sees specialists every two weeks. Emmie maintains a feeding tube, at least for now, to help ensure proper nutrition and enough hydration which is especially important after a kidney transplant. The family and visitors must take extra precautions to protect Emmie from viruses and bugs which can be more dangerous for her immunocompromised body.
On average, a kidney from a living donor lasts 15 to 20 years, according to the National Kidney Foundation. Garro is also hopeful improvements in immunosuppressive medications required to keep a person’s body from rejecting a transplanted kidney, and care for organ recipients will help prolong the life of donated kidneys.
The hope that brought her this far can’t take a day off now.
“Emmie’s medical journey is not over,” said Garro. “She has a long road ahead. “But she is happy and growing and becoming the incredible little girl we dreamed she would be.”
Credit: HYOSUB SHIN / AJC
Credit: HYOSUB SHIN / AJC
Christmas, together
On a recent morning, Emmie woke up at 5 a.m. bursting with energy. She was on a mission: Where did the Elf on the Shelf fly to overnight?
Then she heads to the piano, tapping the keys, and starts singing: “Jesus loves me.”
This Christmas, the Mahoneys appreciate time together, at home — the five of them, together.
And more time to enjoy together. This will be the first Christmas morning that her parents don’t have to start getting the machine ready at about 6 p.m. and put Emmie to bed by about 7 p.m. to get started on a dialysis treatment that used to last up to 14 hours.
This Christmas, they will take nothing for granted.
“It’s been so hard, but right now it’s so beautiful,” Emmie’s mom said. “I think going through all of the hard things, gives life a depth and richness that wasn’t there before.”
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Credit: custom
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