At 13 weeks gestation, Sara Hogan first knew that the daughter she was carrying might not make it to birth. A blood test revealed that the baby might have Turner syndrome, a chromosomal abnormality in which a girl is missing all or part of the second X chromosome. Most pregnancies of babies with Turner syndrome end in a miscarriage. The 1 percent that make it to birth have heart defects, short stature and never go through puberty.
Turner syndrome was confirmed and Hogan began to have weekly ultrasounds to monitor her baby’s progress. At the 22-week ultrasound, Hogan learned that her baby’s heart had stopped. The next day she was induced to give birth to Mary Margaret Hogan on April 22, 2016.
Hogan had asked her doctors if she could hold her baby. She had read the guides that compared the size of babies each week to fruit and vegetables, and wasn’t sure if her baby would be big enough to hold.
Mary Margaret was 1 pound 9 ounces. “She was tiny, but she still had little fingers, little toes, little hair, a cute little nose,” Hogan says.
Hogan and her husband, Don, wanted to keep Mary Margaret with them in the hospital, to give their family time to hold her and to have pictures taken of the family by Now I Lay Me Down to Sleep, a nonprofit that provides families pictures with their stillborn baby.
St. David’s Medical Center was accommodating, but there were logistical issues to keep the integrity of the body.
“My body heat and her were not super compatible,” Hogan says.
To keep the body, especially the skin from deteriorating, the nurses packed bags of ice around the baby to keep her cool so that the family could spend as much time with Mary Margaret as possible.
Still, a nurse had to explain that if the family wanted to have the best pictures with the baby the next morning, they would need to take her to a refrigerated area.
“It was hard for me to hear that by holding my daughter that I was accelerating the process,” Hogan says. “It was hard for the nurses to tell a family going through it. They are going through a horrible experience.”
That night, Hogan spent the night in the hospital, away from her baby, with the sounds of other babies crying in the rooms near her. “There are still joyous occasions happening around you,” she says. “It was really emotionally hard.”
In the months after Mary Margaret’s birth, the Hogans began to hear about other parents who had lost a baby at or before birth, and they began to hear about the CuddleCot — a Moses basket with a refrigerated blanket that is plugged in to keep the baby cool. Parents can keep the baby at bedside rather than have to send the baby back and forth to the morgue.
The Hogans began raising money to be able to donate CuddleCots to local hospitals. Each one costs about $2,800. Last fall, they donate their first two, one to a hospital in Bartlesville, Okla., where Don is from, and the second one to St. David’s Medical Center. They now have donated six CuddleCots, five to St. David’s hospitals and the one in Bartlesville.
The CuddleCots have a plaque on the box that reads:
“In loving memory of Mary Margaret Hogan, “our little bluebonnet,” Matthew 19:14. In association with S.O.B.B.S (Stories of Babies Born Still) & the United States Cuddle Cot Campaign Initiative.”
The goal is to have one in every labor and delivery unit in Austin. The Hogans are raising money through S.OB.B.S. by individual donations, and also have had events at Kendra Scott and Athleta. They also do family photo shoots at the holidays with all of the donations going to buy CuddleCots.
Mary Jane Philpy-Dollins, a nurse at St. David’s Medical Center, estimates that the cots have been used about a dozen times since the hospital has received them. “It has been very successful,” Philpy-Dollins says. Parents can use them as much as they want if they want to bond with the baby and grieve at bedside.
Now parents can keep the baby with them for as long as they wish while they are in the hospital. “It really does let the parent be a parent as much as possible,” Philpy-Dollins says. “They’ve been through an unspeakable thing.”
Not every family who would qualify does decide to use it. Some would rather spend more time with the baby at the funeral home instead of in the hospital, Philpy-Dollins says.
“It has been very beneficial to allow a family to grieve in their own way,” Philpy-Dollins says.
Nurses have been trained how to use it. They were already helping families bond with the baby by allowing them to hold them, dress them and have pictures taken with them. Nurses also prepare a memory box with footprints from the baby, a lock of hair and a James Avery charm, and the staff or a volunteer also knits blankets for the family.
Nurses no longer have to have the awkward conversation that it’s time to send the baby back to the morgue. “We’re exceptionally grateful to the Hogan family,” Philpy-Dollins says. “It’s a true practice change for how we support this patient population. It’s a wonderful opportunity for women to love their infants as much as possible.”
For the Hogan’s, it’s a way to keep Mary Margaret’s memory close to them and to ensure that other families don’t have to let go of their babies before they are ready. “What a great gift to give parents,” Hogan says.
The Hogans are expecting a second daughter within weeks. Mary Margaret reminds them that nothing is a given, Sara Hogan says. “We try to take it each day that I’m pregnant. … I would like to think it’s going to be nice to walk into the hospital and walk out with a baby, but I’m going to cherish the time I have with her.”