Ambassador Family Honors the Memory of Their Daughter at the March for Babies
When Mitzi and Will Ellison walk the trail at Old Settlers Park in the March for Babies on May 9, they’ll be observing, as they put it, their “Grace time.”
It’s a chance for the couple to honor the memory of a daughter born with a severe medical condition. The Ellisons, this year’s March of Dimes ambassador family, have found a sweetness and a richness to life that came from an experience no parent wants to endure.
“We have an appreciation for how fragile life is,” says Will.
It started early in 2012, when the little family of three—Mitzi, Will and 7-month-old Wayne—learned that a second child was on the way. “We got pregnant with Grace in February,” says Mitzi. “And at 12 weeks, we got the first indication that something was up. Our doctor [Dr. Christopher Seeker] and his staff were amazing. The minute we got a positive diagnosis for Trisomy 18, he said, ‘You come in any time.’”
According to the Trisomy 18 Foundation, the condition starts at conception with an error in cell division. Trisomy 18 results in an extra copy of the 18th chromosome, which can cause life-threatening medical complications. It occurs in about 1 in 2,500 pregnancies, and the statistics can be devastating for expectant parents. Fifty percent of babies carried to term are stillborn. Fewer than 10 percent survive to their first birthday.
However, there is hope for survival. For example, Bella Santorum, the daughter of former presidential candidate Rick Santorum, has Trisomy 18 and celebrates her 7th birthday on May 13. That hope, and the desire to give Grace whatever life they could, led the Ellisons to seek information about her specific situation.
Trisomy 18 meant that any number of complications could reveal themselves at any time. “It’s more difficult to prepare,” says Mitzi, “because you don’t really know what’s going on.”
The couple visited Dr. Ronald Shapiro, a pediatric cardiologist, who spent nearly two hours performing a fetal echocardiogram on Grace’s heart as Mitzi lay on her side, uncomfortably large.
“I had polyhydramnios,” says Mitzi. “It’s an excess of amniotic fluid that can stem from heart defects. It made me enormous. I couldn’t feel her moving. It was frustrating every day.”
Afterward, Dr. Shapiro told them Grace’s heart had a serious defect. It meant she had little chance of survival after birth. “She basically didn’t have any walls in her heart,” says Mitzi.
However unwelcome it was, the news did give the couple insight into Grace’s condition. “You have to consider what you are going to do with this information,” says Will. “Even when there were potential surgical options—if hypothetically speaking, they could repair her heart—it still didn’t change the fact that she had Trisomy 18.”
The two ricocheted between worry over Grace’s condition, especially since Mitzi couldn’t feel her move, and hope that her complications didn’t preclude survival. And so it went, until October 17, 2012—a Wednesday—when Mitzi and Will entered St. David’s North Austin for a scheduled C-section.
Although Grace was born blue and not breathing, after four and a half long minutes—a time that “felt like two weeks” to Will—she gave out a small cry and began breathing.
The joy was short-lived, as a nurse trying to perform suction on the baby discovered that Grace had esophageal atresia. Her esophagus and stomach were not connected.
“It was a big, big blow for us,” says Will. “It’s the most primal parenting thing, to feed your child.”
Dr. Seeker eased their concerns when he explained that to be comfortable, Grace needed warmth more than feeding. “Normally, you feed a baby right away, of course,” says Mitzi. “But to survive, she didn’t need to feed until Saturday.”
And the NICU nurses taught them about “kangaroo care,” a technique of skin-to-skin comfort holding, typically used with preemies. “She was very comfy,” says Mitzi.
The Ellisons went through two days of routine new-baby activities, all the while recognizing that their time with Grace was limited. Grandparents, aunts and close family friends came in to meet and hold Grace.
On Thursday, one NICU nurse gave the Ellisons a gift they treasure to this day. She suggested that they take the baby to the little garden outside the hospital. At the time, it seemed unnecessary, but in retrospect, that time has become a solace to them both.
“It was a little bit of normalcy,” says Will. “We were outside on a beautiful day, and we got to feel like a family.”
“It’s probably one of the best gifts that we’ve ever gotten,” says Mitzi. “Grace opened her eyes. Having that memory and those pictures, that aren’t of you in a hospital bed, is a big deal.”
Throughout the day on Friday, Grace increasingly stopped breathing for short periods of time. On Friday night, she slipped away peacefully in her mother’s embrace. “We said a prayer over her and sang to her and said good-bye,” says Will.
Both parents acknowledge it was the hardest day of their lives. And yet, they are comforted by the time they did have with Grace. “You talk to someone who hasn’t gone through it,” says Will. “And you say that you had 61 hours with your daughter, and they say, ‘I’m so sorry.’ You talk to somebody who’s been through stillbirth or Trisomy 18 and had one hour, they say, ‘You’re so lucky.’”
Soon after, the Ellisons looked for a cause, a focus for honoring Grace. “We still have that energy; we still have that hope,” says Mitzi. “We still have all that love in us. March of Dimes makes sense, because we had Wayne and we had Grace, and March of Dimes benefits both of them. It benefits families that have both kinds of babies.”
The couple’s March for Babies team, Give With Grace, raises money for the March of Dimes every year. In addition, Mitzi volunteers with the Family Teams Committee. Kimberly Petrilli, executive director of the March of Dimes Austin, says, “They are a wonderful family who has shown tremendous strength as they go through their journey, and we feel so fortunate to have them as part of the March of Dimes family.”
The Ellisons have since added a son, Weston, to their brood. For Mitzi, the pregnancy with Weston brought up old concerns and a new opportunity to help moms facing hard circumstances.
“It was a very difficult pregnancy, mentally,” says Mitzi. “But I realized that I’m not in control of everything. I couldn’t fix Grace. I couldn’t worry her into not having a problem. To moms that are just getting a diagnosis: there is hope. It may not work out exactly the way you want it to, but that doesn’t take away the hope of life and the hope of living. I know it’s really easy to go into the depths of despair. It’s an out of order death. You do have to allow yourself anger.”
“It’s just shifted the hope,” says Will. “It’s hope from the diagnosis being wrong, to hope that she’d survive, to hope that we’ll see her in heaven. Hope and trust.”
By Sherida Mock
