Ann Marie's Legacy

Baby’s story highlights anencephaly, neonatal organ donation
Sheila Smith
Wednesday, May 15, 2019
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Siblings (above, from left) Mark, Amelia and Isaac Istre, holding the family’s “Ann Marie” doll.

WELSH - Floyd and Nancy Istre have been married for nearly seven years and oversee a busy household that includes Mark, 7, Isaac, 5, and Amelia, who will celebrate her first birthday in August.

If you mention Ann Marie to the brothers, they know you are talking about the thirdborn in their family, the sister who arrived 14 months before Amelia. The world itself might one day know Ann Marie as someone who saved millions of lives.

A diagnosis and a decision

Ann Marie was born sleeping at 6:27 p.m. June 13, 2017, at Lake Charles Memorial Hospital for Women. Her parents knew long before then she would not be going home with them. If anything, they were told, she might live a few minutes to a few weeks.

Anencephaly is a neural tube defect in which parts of a baby’s brain and skull do not form. Most babies with this birth defect do not survive more than a few days but some have lived for several years. They lack quality of life, however, often blind, deaf, unable to feel pain and unaware of their surroundings.

Nancy was 21 weeks into her pregnancy when an anatomy scan revealed Ann Marie had anencephaly.

“The room was silent toward the end of the scan and then my doctor told us the baby was incapable of life,” the mother said. “There wasn’t even any certainty she would survive the full pregnancy.”

Abortion was not an option for the Christian couple. The OBGYN suggested they see a maternal-fetal specialist to confirm the diagnosis.

“We weren’t given any hope from that appointment with the specialist,” Nancy said. “But I’m thankful we could talk to that doctor and get explanations. We were assured it was nothing we had done or anything related to genetics. He said no one really has an answer as to why anencephaly happens.”

Floyd and Nancy questioned genetic factors because son Mark experienced birth defects as well. His issues and Ann Marie’s were unrelated. The parents’ experience with Mark, however, was influential in a decision made regarding Ann Marie.

“When we were in the NICU with Mark, we saw these parents whose children were dying or waiting for an organ transplant,” Nancy said. “We support organ donation. So we thought, we know our baby will not survive. If we can save someone else’s child, why wouldn’t we do that?”

She asked her OBGYN about neonatal donation. He said he had never been asked that question but suggested she contact the Louisiana Organ Procurement Agency (LOPA).

Awaiting Ann Marie

Floyd and Nancy prepared their families and friends for what awaited them upon delivery. Their mothers contacted funeral homes to research pre-planning. It was later decided the baby girl would be buried in a dress fashioned from her maternal grandmother’s wedding gown that would include an item from Floyd’s grandmother.

Uncertain of how big Ann Marie would be, Brenda Chesley, the best friend of Nancy’s mother, made two dresses. One was average in size while the other was made for a premature infant.

Another part in their planning was contacting LOPA, specifically Laura Leguin, research and donation support coordinator. She works with families of neonatal donors beginning as soon as three to four months before and up to delivery, as well as long after.

“Typically neonatal cases involve families who know well in advance that the pregnancy is considered terminal or that the baby will not live very long after birth,” Leguin said. “Most of the time organ donation for transplants is not an option because the babies are often so small. How these donors do save lives, though, is that their organs are used to research and find cures for diseases like cancer and diabetes.”

Two months before delivering Ann Marie, Floyd and Nancy met with Leguin. She began attending Nancy’s OBGYN appointments to be aware of any developments and explain what involvement the doctor could expect from LOPA.

Nancy’s doctor was dedicated to the family’s journey as well.

“He was already scheduled to be out of his office for my due date, so we decided to induce at 38 weeks so he could be there with us,” she said. “He didn’t want a stranger with me when the time came.”

Floyd and Nancy had a full circle of support the day of delivery. Dozens of family members were at the hospital awaiting the baby’s arrival and praying. Leguin and other LOPA staff were present. A deacon from the family’s church had arrived to pray with the parents and baptize the infant if she survived birth.

There was a heart monitor for the baby. At 4:45 p.m. a heartbeat was detected. An hour later, it was not. Nancy asked her doctor to go ahead with the delivery.

“We knew then that there was nothing we could do,” she said.

Precious moments

Sweet Ann Marie weighed in at 3 pounds, 3 ounces. She was a beautiful baby girl with dark hair like her father.

Her death was painful enough but worsened by the severity of her condition.

“I felt robbed in a way because her physical condition was bad, really bad,” Nancy said. “But the maternal-fetal doctor didn’t share that with us. If we had known how bad it was, we would have known there was no likelihood that she would be born alive with the severity of everything.”

Because a lack of brain and skull development causes the head to be misshapen, typical hats used for premature or newborn infants do not fit babies with anencephaly. Even the smallest hats knitted by Floyd’s mother were too big for the tiny girl.

“Thankfully two days before I delivered, I was surprised with a care package from a group called Anencephaly Hope,” Nancy said. “My stepsister had reached out to them when I was pregnant and they sent a box that included a special hat and a first birthday candle and balloon.”

Floyd and Nancy’s mothers dressed their granddaughter. A lock of her hair was snipped and her footprints were taken. The photographer who had captured the couple’s engagement and wedding pictures and their sons’ baby pictures agreed to photograph the birth. She was able to get images of Ann Marie with her parents, brothers and other relatives.

“It was very hard to explain to a kid what was going on,” Floyd said of his sons. “There was no way to explain to them what they would see, that their sister would look different from other babies but that it was OK. As it was, my mind was lost. So I just told them to tell her they loved her and not to be afraid. And they did well. I was very proud of them.”

About two hours after delivery, Ann Marie was taken to the operating room where her ovaries, lungs and a shoulder muscle were harvested. She became the first baby girl in the nation to donate her ovaries for research.

“That was an opportunity that came up at the last minute,” Leguin said. “We had let researchers know about Ann Marie’s case. Right before we went into the operating room, a researcher said he was on board for a project involving cancer research.”

Ann Marie was later returned to her parents’ room and remained there until Nancy was discharged. Two days after the delivery, Floyd and Nancy spent their fifth wedding anniversary planning their daughter’s funeral. She was laid to rest two days later.

The importance of Cuddle Cots

In the nearly two years since Ann Marie was born sleeping, life for the Istre family has been bittersweet and set Floyd and Nancy on a new path.

Part of that path involves grieving what could have been while celebrating what is. Amelia, who shares her sister’s dark hair and round cheeks, was born 14 months after Ann Marie. Floyd and Nancy were often anxious throughout that pregnancy, worrying their second daughter could share the fate of their first. When Amelia entered the world healthy and happy, each new milestone reminded them of ones they never had with Ann Marie.

She never took a breath but Ann Marie’s impact through organ donation could someday change the world.

“As a parent, you want your children to leave these little legacies,” Nancy said. “And when you find out your child is not going to survive you wonder what the purpose is. Neonatal and organ donation are not for everyone and I respect that. I’m thankful we were able to ask questions about it and have so much support from Leguin and LOPA. These children have a very important purpose. Other children could be saved.”

Leguin agreed.

“What these babies accomplish in their short, brief lives is more than you or I could ever imagine,” she said. “Moms love to brag on their babies, about the first words and first steps, or the good their kids are doing in the world. Moms of babies like Ann Marie don’t have these moments, but they are so proud to know their children will help save so many lives.”

Neonatal organ donation for research is something few are aware of, including hospitals and medical professionals. Such donation for research is relatively new, according to Leguin, but there might not be a study underway that requires available neonatal organs and tissue at the time of delivery.

Even for doctors and hospital staff who might be familiar with neonatal donation, deciding whether to raise the subject with grieving parents is no easy task, said Nancy.

“I can imagine that as a doctor, it’s already so hard to give the news that a baby will not survive,” she said. “So there definitely isn’t an easy way to ask about neonatal organ donation.”

“It’s definitely a harder topic when you discuss neonatal versus an older child or adult,” Leguin said. “Usually the families of these babies contact us after doing their own research. We do have doctors who will refer them to us but the mothers are already so overwhelmed, they come to us when they are ready.”

Neonatal organ donation enables research that will save millions. But there are tiny lives like Ann Marie’s that cannot yet be saved. For those families, Floyd and Nancy want to give them time to make memories with their babies before they have to say goodbye. They would like to do this by raising funds to purchase a Cuddle Cot for Lake Charles Memorial Hospital for Women.

A Cuddle Cot is a type of cooling pad that can be inserted into bassinets and cribs to preserve a stillborn or deceased infant’s body. This prevents babies’ bodies from deteriorating, giving grieving parents more time to hold their children, take pictures and allow visits from family and friends, sometimes for several days.

The Cuddle Cot, however, was only introduced in the U.S. in 2013. It is not a standard device available in all hospitals. Each cot costs about $3,000 and must undergo maintenance every two years.

“I didn’t find out about this until after I had Ann Marie but it’s something I think every hospital should have,” Nancy said. “Some moms have to stay in the hospital long after the baby is born. They could have their baby with them. Some hospitals even allow parents to take the Cuddle Cot home until the baby’s funeral, which is amazing in itself.”

Right now the goal is to see a cot at the hospital where Ann Marie was born, as well as have extra funds available for maintenance. However, if public support is strong enough, the Istres would like to provide a cot to another area hospital.

Floyd and Nancy have formed a nonprofit organization, A Mission for Ann Marie, in their quest to acquire at least one Cuddle Cot. An account under the same name is available at JD Bank and donations to the organization can be made at any branch.

Next month Ann Marie would have celebrated her second birthday. Instead her family will celebrate her lifesaving legacy.

Her family regularly talks about her. Precious mementos from her short time on earth are found around their home. There is a special pillow Nancy commissioned that is the same length and weight as Ann Marie was. A shadow box holds her first outfit and items from her time in the hospital. A special cedar box is where her parents put Christmas cards and notes for their little girl. In her granddaughter’s honor, Floyd’s mother has been crocheting hats especially designed for babies with anencephaly, donating them to LOPA and Lake Charles Memorial.

Floyd and Nancy want to tell the world about their special girl.

“It’s important that people know about anencephaly and neonatal donation,” Nancy said. “For some reason no one really talks about anencephaly or infant death or miscarriage. There’s nothing to be ashamed about. These are our babies and people should know about them, know their stories.”

“And parents need to know they aren’t alone,” Floyd said. “Other parents know what you are going through. You can find those people and reach out to them. We know it’s tough. It’s so hard to lose your child but it takes a toll on your whole family.”

In the initial weeks and months after Ann Marie’s funeral, Floyd said he and his wife were mentally broken and physically exhausted. They were desperate for answers to so many questions. They encourage families to find strength in one another when facing disease and death.

“In our vows, we said in sickness and health,” Nancy said. “We weren’t sick but our child was. You have to make your way and love your way through this. We also had to pull through for our kids. It’s hard. It’s still not easy. But we believe everything has a purpose. We don’t know the entire purpose for what happened with Ann Marie but we know it’s a very important one.”