World's most premature twins' parents speak about faith, babies' fighting spirit
World's most premature and lightest twins on record turned one in March. Their parents spoke with Fox News Digital about how their faith in God sustained them during their long and scary hospital stay.
A Kansas mother who knows the wrenching heartache of losing a baby has turned her grief into a mission to help others. She assembles keepsake sets to honor short but precious lives.
When Amanda Smith went into labor in a hospital in Wichita, with her son Robby in February 2012, she was just over 22 weeks pregnant.
When Robby was born three days later, on Feb. 24, 2012, he was considered to be below the point of viability — and lived for just two hours, she told Fox News Digital.
"Robby was born at 1 pound 4.4 ounces and 12 inches long. He was early and tiny, but he was perfect," Smith also said.
As she and her husband Tanner had expected to have several more weeks of preparation before their child's arrival, they were not prepared in the slightest.
"We didn't have a camera and we didn't have a special hat or blanket for him," she said. "Our kind nurse searched high and low for a hat at the hospital that would be small enough to fit his tiny head."
Although there weren't any small enough to fit the head of a baby just over a pound and a quarter, a nurse came with a "very precious small blue hat with a pom-pom at the top," Smith said.
Parents Tanner and Amanda Smith, along with their baby, Robby, shortly after their son was born prematurely in 2012. (Project Robby)
And while the hat was "entirely too big," it became incredibly special to Smith in the wake of her little one's passing.
"Even after I no longer had Robby to hold onto, I had his hat," she said. "That little blue hat brought me comfort on countless occasions when I needed to feel close to him."
"It isn’t just a hat. It represents Robby’s life. It was a short life, but he mattered; he was loved, and he was here."
"I slept with it, I carried it around in my hoodie pocket when I was at home, and when I left I put it into my purse and took it along," she continued.
"I didn’t have my baby, but I had that small piece of him."
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As Smith progressed in her grief, she said she "stopped relying on the comfort of that hat."
She continued, "It isn’t just a hat. It represents Robby’s life. It was a short life, but he mattered; he was loved, and he was here. That hat is a physical reminder of his existence."
About two-and-a-half years after her son died, Smith was moved by the recent death of her grandfather — whom Robby was named after — to channel her grief into something more concrete to honor her son.
"I realized that the way to honor his life would be to collect tiny hats and blankets for the hospital … where he was born."
"I just didn’t know what or how," she said.
"On a day that I was having a particularly difficult grief day, as I was holding Robby’s hat, I realized that the way to honor his life would be to collect tiny hats and blankets for the hospital in Wichita, Kansas, where he was born," she said.
"I started by contacting the hospital where he was born to ask if they needed this type of donation, and they very excitedly said ‘yes,’ as they didn’t receive donations like that."
Smith and her mother enlisted the help of family and friends to help make the blankets and hats — at the time, neither of them knew how to crochet.
Project Robby's Kansas headquarters is shown here; it contains handmade crocheted items organized by size and waiting to be sent to grieving families. (Project Robby)
She also turned to her blog, which she had started to document her pregnancy with Robby. Following his death, she wrote about how she was handling the grief.
"I decided to write out our story and talk about his hat, how important it was (and still is) to me, and why I wanted to be able to donate tiny hats for babies born prematurely who unfortunately don’t survive," she said.
"I was so worried that we wouldn’t reach our goal."
Her initial goal was to donate 50 hats and 50 blankets, with a stretch goal of 100 hats and 100 blankets.
"I was so worried that we wouldn’t reach our goal," she said.
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As it turned out, she did not have much to worry about.
The blog post was shared around the world, and from August 2014 until February 2015, friends, families and complete strangers donated enough hats and blankets to fill 13 Rubbermaid containers, said Smith.
"I honestly thought after we delivered our donation to [the hospital] that we would be done and our ‘project’ would be completed," she continued.
"I believe our hearts really lead us."
This was far from the case: What would become "Project Robby" was just beginning.
Other hospitals from across the U.S. heard about Smith's donation of tiny hats and blankets. They began reaching out, seeing if they, too, could receive blankets and hats for their smallest patients.
Baby Robby Smith only lived for two hours when he was born at 23 weeks' gestation on Feb. 24, 2012, in Wichita, Kansas. (Project Robby)
"This is when we started working toward becoming a nonprofit organization, so we could continue our mission of helping families with angel babies," said Smith.
Smith named the nonprofit Project Robby after her son. Smith and her mother run the 100% volunteer group out of their headquarters in Kansas.
"After our initial donation," said Smith, "we continued to receive many different items from amazing ladies all over the world."
"Pregnancy and Infant loss can be an uncomfortable topic for our society, but it is an important topic."
Among these items were hats, blankets, booties, cradles, cocoons and most notably, angel wings.
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"When we started to receive angel wings in the mail from different crocheters, we decided that we would add the angel wings to each Project Robby Bereavement Set, and when we started the Keepsake Set program, we decided to add the angel wings to those as well," Smith said.
Two Project Robby Keepsake Sets are shown here. Amanda Smith and her mother assemble all the sets by hand; they rely on instinct when picking out items. (Project Robby)
The Keepsake Set program began in 2017, when Smith realized that some women who lost their babies early in pregnancy had nothing physical to represent their children.
Or, perhaps they were not far enough along in their pregnancy to be in labor or to be cared for in a hospital's delivery unit.
"When I say that we care about their grief and their baby, I mean it with my whole heart."
A Project Robby Keepsake Set contains a size-appropriate hat, blanket and angel wings for individuals who have lost children from four to 36 weeks gestation.
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Bereavement sets, sized for children from 18 to 40 weeks gestation, are provided to both hospitals and bereavement photographers for children who are born too early and will not survive.
Those who request Project Robby Keepsake Sets are able to request a specific color. Many parents who lose children very early on do not know if their child was a boy or a girl — and request something gender-neutral to honor their child. (Project Robby)
"For so many families, especially those who experience losses at earlier gestations, [the Project Robby Keepsake Set] is their only physical reminder of their baby," said Smith.
"I hear from a lot of families that receiving a Project Robby Keepsake Set helped them to know that someone else out there was remembering their baby with them," she added.
She said it's often viewed as "validation that their grief matters and their baby matters."
"When I say that we care about their grief and their baby, I mean it with my whole heart. An important part of the grief journey is to have your grief validated, and that is what we do at Project Robby."
"Our babies — no matter what gestation they were lost — matter."
For Smith and her mother, picking out the items in the Project Robby Keepsake Sets is a delicate process, she noted.
Families who request Keepsake Sets are able to provide information about the gender (if known), name (if given) and any other information about their baby.
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"Most of the time, when picking out sets for families, I have had conversations with them either through their notes on their request form, emails or comments on our different social media pages," Smith noted.
"I believe our hearts really lead us," said Smith.
While Smith believes what she does with Project Robby is worthwhile and important work, some days are easier than others.
Three Project Robby Keepsake Sets, featuring hats for very small babies. (Project Robby)
"Loss is heavy," she explained. "Each day I receive emails and messages from women and men who want to be able to share their stories with someone, and I don’t take that lightly."
Smith reads each story that is sent to her, she said.
Many women request a set "for losses 30, 40 and even 50-plus years" ago.
"Some people are sharing their stories for the first time [with] someone other than family," she said.
"Pregnancy and Infant loss can be an uncomfortable topic for our society, but it is an important topic."
Smith also said, "Our babies — no matter what gestation they were lost — matter."
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On particularly hard days, Smith said she reads through emails from people who have gotten their Keepsake Sets.
Robby was born on Feb. 24, 2012, at just over a pound. He became the inspiration for creating accessories correctly sized for premature babies. (Project Robby)
Many women have expressed gratitude for having something that could have belonged to their "angel child" — especially those who miscarried before they had an ultrasound or before they had a baby shower.
On the 24th of each month at 9 a.m. Central time, Smith opens a form on the Project Robby website where parents can request Keepsake Sets in honor of their angel babies.
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There is no time limit for when a person can request a Keepsake Set, said Smith. She said that "many women request a set for losses [from] 30, 40 and even 50-plus years" ago.
Sets are provided free of charge, but the number of applications is limited due to the size of the organization.
A photo of Amanda Smith's two daughters, Delphine and Alice Ruth, with an outline representing her late son Robby. (Project Robby)
"We are an all-volunteer run organization," said Smith. "We say we accept 50 request forms each month, but we almost always accept anywhere from 75-100, if not more."
Smith is now a mother of two girls, Delphine and Alice Ruth, ages 10 and 6. She is also a certified grief coach with a master's degree in nonprofit leadership.
Project Robby accepts both monetary donations to cover the cost of shipping and donations of crocheted items for future kits.
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"What we do at Project Robby is sad, and can be emotionally heavy, but at the end of the day I know that what we do is important," said Smith.
Additional information can be found on ProjectRobby.com.
