Against the odds, a Lodi family celebrates a joyous first birthday

Jun. 25—In 2020, Lodi residents Ralph and Sarah Clark were excited they were about to be parents for a second time.

But 18 months ago, they received news that there may be complications related to their unborn child.

"When you get a phone call from your OB/GYN at 9:30 p.m., it's not good," Sarah Clark said. "I was really upset and emotional about it all."

What was even more upsetting, the Clarks said, is that the OB/GYN, as well as other doctors, weren't exactly sure what could be wrong.

They were leaning toward a diagnosis of Trisomy 18, also known as Edwards syndrome, a genetic condition that causes physical growth delays during fetal development.

The only way to confirm it during pregnancy is through amniocentesis, a procedure that could result in a miscarriage.

The Clarks decided against the procedure, opting to wait until their daughter Maggie was born the following May.

"I had never heard of Edwards syndrome until I Googled it," Ralph Clark said. "And Googling it is possibly the worst thing you can do. The things you read are just awful and heartbreaking."

According to the Cleveland Clinic, Edwards syndrome occurs when a person has an extra copy of chromosome 18, which is random and unpredictable.

The Cleveland Clinic reports that the condition occurs in an estimated one in every 5,000 to 6,000 live births, and in one out of every 2,500 pregnancies.

Newborns diagnosed with Edwards syndrome have a 50% chance of surviving birth, and of those that do, 95% do not live to see their first birthday.

The couple's OB/GYN had seen couples carry three babies with Trisomy 18 before, none of which lasted 10 weeks during pregnancy, Sarah Clark said.

The months between December of 2020 and May of 2021 were trying for the family, the couple said.

"It was really probably some of the worst times of our lives," he said. "Unfortunately we couldn't enjoy the pregnancy because we were constantly in a state of fear."

Sarah Clark said while her OB/GYN was hopeful Maggie's birth would be a success, other doctors urged the couple to consider terminating the pregnancy because of the bleak survival statistics.

"It was very scary," she said. "They told us we wouldn't be able to take care of her, and that we wouldn't be able to properly care for our son because all of our focus would be on Maggie, or that she'd be a vegetable and wouldn't do anything."

As a result, the couple didn't prepare a bedroom for her as the thought having one ready and Maggie not being there was too much to bear.

Once Maggie was born, the Clarks agreed to a genetic test, which confirmed the doctors' fears. Maggie was diagnosed with Trisomy 18.

Symptoms of the condition during pregnancy include very little fetal activity, too much amniotic fluid surrounding the fetus, a single artery in the umbilical cord, a small placenta and birth defects, the Cleveland Clinic said.

A child born with Edwards syndrome will most likely have decreased muscle tone, low-set ears, overlapping fingers or clubfeet, a weak cry and minimal response to sound, and a small physical size, among other defects.

Severe symptoms include congenital heart disease and kidney disease, breathing abnormalities, hernias, scoliosis, or gastrointestinal tract and abdominal wall issues.

The Clarks' daughter Maggie weighed just 4.6 pounds when she was born at St. Joseph's Medical Center in Stockton and suffered breathing abnormalities. Ralph Clark said she had a large hole in her heart that caused her lungs to fill with fluid.

She and her mom were transferred to the University of California San Francisco's neonatal intensive care unit at Children's Hospital in Oakland, and three months after her birth, Maggie underwent eight hours of open heart surgery to fix the problem.

"She came out of the operation turned around," Ralph Clark said. "It was like night and day. Her doctors were just amazed."

One year later, Maggie is doing well, he said. She's able to breathe, although she still needs round-the-clock oxygen support, and she is fed through a gastrointestinal tube in her stomach. It is unknown if she will continue to need the oxygen or the tube as she grows older.

The Clarks said Maggie is the first child with Trisomy 18 to undergo VSD heart repair at Children's Hospital, and the doctors at UCSF are using Maggie as an example of survival in presentations about Edwards syndrome.

Sarah Clark said Maggie laughs, recognizes the family and is able to cross her legs, just like a typical child. However, her fight continues.

"When she's well, she's fantastic," she said. "But when she's sick it's terrifying. Just getting the common cold, which she's had three times so far, ends her up in the ICU. But we've learned how to manage it at home now, and her system just needs to get better equipped to handle illness."

Since Maggie's birth, the couple have joined Speaking Out for Trisomy to advocate for parents who have gone through similar journeys with the condition.

"A lot of times the medical community can be just so cold and cruel when it comes to this diagnosis," he said. "Statistics are often unfavorable so (medical experts) push termination. People need to see the whole picture, and they need to know that there is support out there for them."

The family still has an uphill battle with the syndrome, but are happy Maggie was able to come home to Lodi after a five-month stay in the NICU.

"We feel so blessed," Ralph Clark said. "She smiles now, makes noise. She's starting to act like a baby should act. It's kind of one of those things where we just want people to know, that even with suffering, you can have hope. And everything we went through, it was all worth it just for one little laugh."

Sarah Clark said Maggie is the strongest member of the family, and she hopes her daughter's journey will show Trisomy 18 can be a positive experience for anyone who has a child with it.

"No matter what happens with Maggie, her impact on our family's life matters," she said. "It's immense, and I wouldn't trade it for anything in the world."

For more information about Trisomy 18, visit www.trisomy.org.