Forever Tethered

Louise Valente’s first amniocentesis in 1992 was unnerving. She was 35 and pregnant with her first daughter Marissa. In an amniocentesis procedure the doctor extracts amniotic fluid from the uterus to test fetal cells for genetic or health conditions.[1] Usually women between 15 and 20 weeks of pregnancy that are older than 35, have a family history of genetic diseases, or received concerning prenatal exams have the procedure done.[2] Louise and her husband Dan watched as the doctor had trouble inserting the thin needle through Louise’s abdominal wall. Her uterus responded by tenting, a protective response where the chorioamniotic membrane separates form the uterine wall. The procedure was not going to plan. “Lights ON! Lights OFF! Lights ON!” the doctor shouted. A frustrated nurse flickered the light switch in response.  Louise was terrified under the glaring lights.

Despite the initial frightening procedure, the rest of Louise’s pregnancy did go to plan. She gave birth to Marissa at St. Joseph’s Hospital in Orange, Calif, on January 19, 1993. Louise then became pregnant again at 36. After the first unsettling amniocentesis experience, Louise and Dan decided against having the procedure. They didn’t expect health complications. They also decided they wouldn’t have an abortion if their baby had a health condition. The procedure would not change the delivery.

The atmosphere of the delivery room on the night of Friday, January 26, 1996 was celebratory and calm. After giving birth though, the team of doctors were silent. Louise asked for the sex of her child. They were busy analyzing the baby’s cleft lip and palate and incomplete skull. They then revealed she was a girl. Louise held her. Her name would be Madeline. She had six fingers on one hand, and one of her heals was crooked. Louise thought the heal looked like it “had been pinched on the way to earth.” They then took Madeline into testing. She was devastated and in shock.  

At 2 a.m., the doctors informed Louise and Dan that Madeline had Trisomy 13. There were three copies of her 13th chromosome. Madeline’s birthday was supposed to be a celebration of life. They hadn’t prepared for heartbreak. Dan called family and friends to deliver the news from the hospital.

After Madeline’s birth, Louise’s doctor moved her to a different floor to not be around other mothers and to recover from a blood clot. There was a postcard-sized orange and yellow fall leaf taped to her door. The symbol was to alert hospital staff of Madeline’s condition and that Louise was grieving. Madeline was hospitalized one floor below her in the baby NICU. Louise wasn’t allowed to stay downstairs with her. She only saw her a few times each of the days. Hospital staff would even use their break time to wheel her downstairs to Madeline. Dan wouldn’t go without Louise.

A contracted blood technician would come into Louise’s room once or twice a day to draw her blood. The technician would say inappropriate statements to her. One time, she said, “Maybe she will heal – you don’t know.” Another time, “Well you still have another one, you can get pregnant again.” Louise started acting like she was on the phone when the woman walked into the room to avoid speaking. A hospital administrator eventually overheard Louise talking about the situation to a family member, and they made sure the technician never entered her space again. “It really touched me that they spent so much time and energy protecting me,” said Louise. She was frustrated, though, that she couldn’t be with Madeline all the time.

Louise and Dan not knowing about Madeline’s Trisomy 13 also meant that they had to deal with administrative tasks that were difficult for grieving parents. Dan had to plan Madeline’s funeral from the hospital, an especially distressing job. Even though the Valente’s only had Madeline for two days, the time was a miracle for Louise. Madeline was baptized. Immediate family met her. Marissa, three at the time, still remembers her to this day. Then, she passed away. The shock of the whole experience made it harder to understand.

In the following months, Louise wondered if not doing the amniocentesis was the right decision. Would it have been better to know and prepare? Would it make saying goodbye to Madeline any easier? She knew she was thankful, though, for the uninterrupted joy during pregnancy. Was it worth it? She teetered between these doubts. It was difficult to move forward in the uncertainty.

…

Throughout 2004 and 2005, Louise was able to see what it would have been like to know about Madeline’s condition during pregnancy. Hollis Shaner was a close friend from their Orange County Church, Creekside. At 18 months pregnant, Hollis found out that her expected daughter, Hannah, had Trisomy 18. There were three copies of her 18th chromosome. Most babies with Trisomy 18 pass away by the age of one because of the severe health complications. Hollis and her husband Tim had decided to do an amniocentesis because of an uncertain blood test result in prenatal screening. She was also 40 years old, so the doctors had ordered more tests. When Louise found out, she immediately told Hollis about Madeline.

“Louise was the only other person in my life who had experienced anything like that,” Hollis said. “Walking through it with me helped her to understand and process what she had gone through.”

Only 18 weeks into pregnancy, Hollis had an arduous amount of time to know about Hannah’s Trisomy 18. Louise’s experience then helped. She knew exactly which preparations she wish were completed before giving birth. The last minute funeral plans were especially difficult, so Louise went with Hollis to the funeral home to pick out a casket before Hannah’s birth. The casket came with a teddy bear and a charm for Hollis to keep. At the funeral home, an anonymous staff member found out about Hannah and paid for the entire purchase. Choosing the casket was painful, but she was grateful for the care that went into the process.  

The gestures of kindness and ways in which the community supported the Shaner family in the preparation for Hannah touched Louise the most. Their church kept Hollis busy in the remaining five months. They had her plan a hoedown-themed Sadie Hawkins Dance. One night, the congregation surprised Hollis and her husband with a candlelight prayer.

Hollis often had to be her own advocate during medical planning. She was steadfast in opting for a C-Section with her doctors.  

“Why would you want to do that?” one asked. “She’s not going to live. Why would you want to cut yourself again?”

“I’m going to do whatever it takes to give her a chance,” Hollis said. She was confident in her preparation and decisions, even when doctors couldn’t understand why she’d endure seemingly unnecessary pain.

Hollis went into labor on February 1, 2005, in the Kaiser Anaheim Hospital, Calif. About 40-50 family members, friends and members of their church waited in the lobby for Hannah’s arrival. Louise remembers the confusion of the hospital staff when seeing the crowd. They thought there was a celebrity in the building.  

In the hours before the birth, each of Hollis’s five doctors came individually to confirm she understood the implications of Hannah’s Trisomy 18. Even with all of the preparation and time to grieve, this was the hardest.

The C-Section went smoothly. Hollis has never forgotten her doctor’s first words.

“Oh my gosh, she’s so beautiful,” she said.

Tim videotaped the moment so they could remember every second with Hannah. She was four pounds and smaller than a premature baby, even after a full-term pregnancy. Only doll clothing would fit around her body. Her ears were lower than normal, and hands were clenched. Her feet, similar to Madeline’s heal, were crooked.

Tim then returned to the lobby crowd. Louise cheered with everyone when he relayed that Hannah made it through the birth. The hospital staff looked the other way and let more people than permitted into Hollis’s room. She usually wouldn’t have let anyone touch her baby for three months. But instead, she allowed everyone to pass Hannah around so they could meet, hug and love her. Laughter and prayer filled the room. More groups were let in 15 at a time. The pain of knowing during pregnancy did allow for the Shaner’s entire community to be present.

With casts on her hand and arm, Hannah was able to go home with Hollis and Tim for two months. Louise remembers these months well and treasures her time spent with Hannah and Hollis while Tim was at work. She would take care of Hannah and Timory so Hollis could rest. She accompanied Hollis on several doctor visits. Then, on June 6, after returning to the NICU, Hannah passed away.

…

Today, St. Joseph Hospital in Orange, Calif, where Madeline was born, now has a perinatal palliative care program for mothers like Louise and Hollis. Debra Bolton is one of the registered nurses that heads the department, called the Perinatal Comfort Care Program. The St. Joseph team started the initiative 15 years ago. They strove to improve emotional and physical treatment for mothers pregnant with babies that had terminal illnesses. 

Before the program, a baby born with health complications would immediately be sent to CHOC Children’s Hospital, which shares a campus with St. Joseph Hospital. Often the baby would pass away at CHOC while the mother was still in labor, delivery or the recovery room. It was also common for doctors to be confused with patients who wanted to carry their baby to term, even if it would likely pass away. Debra remembers one doctor who simply said, “See you at the delivery!” after the diagnosis and offered no support throughout the patient’s pregnancy.

“We didn’t feel that we were doing a good service to the moms,” Debra said. “If we’re going to look inside and diagnose them, then we should still be able to take care of them, right?” she remembers thinking. The St. Joseph team then wondered, what if the mom and baby stay together during the care? If the doctors knew the baby would only live for a few hours, keeping the baby and mother together would prioritize valuable family time. This grew into the St. Joseph Perinatal Comfort Care Program.

The program developed in stages. The perinatal palliative care team met monthly during the first years to discuss and learn from patient experiences. Debra especially remembers one formative case. An aunt of the baby was in the room with the mother during labor. When the baby was born with health complications, the doctors said she likely wouldn’t survive and suggested the mother stay with her baby. The aunt, unfamiliar with the diagnosis and testing before birth, convinced the mother the doctors were wrong and that her child would live. The baby went to CHOC and passed away soon after. This inspired the conference component of the Perinatal Comfort Care Program. The conference allows for mothers to come in with the family members and friends that will be at the birth to go over the diagnosis, previous testing, and options after birth. It creates complete transparency between the doctors and family. Instead of mothers being confused on what to do during delivery, they can run through options with the hospital staff and family before.

When St. Joseph Hospital first receives a patient pregnant with a baby that has a life-threatening diagnosis, they provide the option to enroll in the program. Debra then begins working with them to create their birth plan. They build around one central question: What are the most important things I want to accomplish in the baby’s short life? They’ll often discuss possibilities of baptism, a birthday party, or who will be the first to visit.

“It really helps them to think through it prior to the delivery so that when the delivery comes they’re not making ‘fly by the seat of their pants’ kind of decisions,” said Debra. The team also makes sure to leave the birth plan open-ended. If the baby is born in good condition the mother can alter the treatment preferences.

Debra and her staff call the family throughout the pregnancy to provide emotional guidance and answers to medical questions. When the mother goes into labor, Debra gets there as soon as possible. She always has her phone on her.

The Perinatal Comfort Care Program helped facilitate important communication between a current patient of Debra and the doctors. In a medical conference prior to meeting with the patient family, the doctors listed their plans. C-Section first. Then, intubate.

“Wait a minute,” Debra said. “The patient wants time with her baby. The family has already said they don’t want a lot of interventions. If you guys plan to intubate this baby and do more testing, you need to make that very clear to this mom.” Debra was the advocate in the room for the patient’s birth plan. It stated the mother prioritized time with her child. She had requested that her baby not be intubated as well. She didn’t want to have to make the eventual decision to remove the life support.

“You can’t surprise her at the delivery and just take the baby off to the NICU,” she explained. 

“Oh. Well, what do we do?” she remembers one of the doctors asking.

Debra then helped create the plan. They would have a staff member at the delivery to assess the baby and make the testing decision based on the baby’s condition. “It’s all about honoring the birth and the baby,” said Debra.

If the baby survives past delivery, the program will also help arrange for hospice home care. When the baby passes away, the program supports the family through bereavement by calling and sending cards.

“It helps the parents because they’re not left with all that unknown at the delivery,” said Debra. They also give a book to program patients called “A Gift of Time,” which walks them through the difficult questions and scenarios of the grieving process. How do you plan a birth when you know your baby won’t come home? How do you shop for a casket instead of a crib? How do I explain this to my other children? They even provide a kids book that walks a child through the passing of a baby sibling.

Debra’s staff are often surprised that the parents don’t seem too upset. She has to remind them that they have been grieving since they discovered their child’s life-threatening condition. “They are scared about this day. Now that it’s finally here, they’re OK with it. They’ve all had all this time, compared to a family that’s coming in expecting to have a healthy baby and bring a baby home. Those patients are hit with the grief and everything right there. It’s much more compounded,” Debra said

Debra loves that the Perinatal Comfort Care Program allows families to process their heartbreak with a plan. She has witnessed that when mothers are emotionally supported, the unimaginable pain of losing a child is more surmountable. I can’t help but think of Louise and her grief in the unknowing. A program now exists, exactly where Madeline came into the world 25 years ago, to help mothers just like her.

…

I joined Louise and Hollis over Zoom in March 2021 when they reunited for the first time in 15 years since the Shaner family had moved from Orange County, Calif.  They are now 64 and 54. Hollis and I were talking about Louise when she joined the call. She heard her name, and joked, “Are you already talking about me when I’m not even online yet?” Hollis laughed in response. “No, not me!” she said sarcastically. It’s like no time had passed. They relayed stories to one another about their children. Hollis explained that Timory was 17, almost 18, which shocked Louise.

“I could talk to you forever,” said Louise. She then started to recount many of the specifics from Hollis’s pregnancy. Hollis admitted that she had put many of the events out of mind for the sake of moving on. Louise eagerly filled in the moments of joy. During Hannah’s two months at home, Hollis’s OBGYN found extra baby formula in the basement of the hospital. He drove to their home to give it to them for free. It was a detail Hollis had forgotten but was glad to now remember.

Louise then told Hollis about a devotional she wrote to process her pain in 2005. She named it “The Crooked Heel.” Hollis eagerly asked to read it. In the piece, Louise writes:

“Madeline would have been nine today: a middle child surrounded by two loving sisters…As I write this I am thinking of the birth next week of little Hannah Mae Shaner, a Creekside child who will be born next week with Trisomy 18 as her “crooked heel.” I find myself carefully lifting Madeline’s clay print and feeling the indentations…”

“When do you think about Hannah the most?” Louise asked.  

 Hollis paused. “It’s kind of a sporadic thing, but when I do I want to see pictures,” she said. She thinks about Hannah in private moments. Just last week she was picturing her and Tim walked in. He was instantly concerned when he saw her crying. She was OK. She just needed the moment for herself. When she lost Hannah, a vision of God taking her from her arms provided strength. She still thinks of it to this day.

For both Hollis and Louise, losing their baby had a large impact on their other children. Timory and Marissa were both three at the time when their respective sisters were born. When Timory turned 10, she asked Hollis to take down the baby photo of Hannah that filled up an entire wall of her bedroom.

“Did it hurt your feelings?” asked Louise.

“I was OK with it because we just needed something new to focus on,” said Hollis. Timory had always been uplifting. Hollis never understood how much of an impact Hannah’s loss had on Timory until later. When Timory was 11, she would sit in the backyard and coo to the Mourning Doves perched in the neighbor’s yard. She asked them to take messages to Hannah. One time while driving in the car, she asked why God had taken Hannah and not her.

“We had some of those difficult conversations. I was always aware that those moments were sacred, and I didn’t want to mess up,” said Hollis. It took her over one year after Hannah’s passing to cry.

 Louise recounted similar experiences with Marissa. One night, they were sitting in bed and she asked her why ducks hadn’t been painted on the bedroom wall for Madeline like what had been done for her. Louise tried to hold in her tears. There was silence. But then, Marissa exclaimed: “I know why! There aren’t any walls in Heaven!” It was in these moments, for both Louise and Hollis, when the words of their daughters provided clarity and peace.  

It had been a while since Hollis had shared her story. Sometimes she gets numb to the fact that it happened to her family. It’s clear, though, that the bond Louise and Hollis share speaks to the need for emotional support through the seemingly intolerable. St. Joseph’s Perinatal Comfort Care Program will continue to help mothers in similar situations and motivate hospitals to base maternal care in empathy. Louise and Hollis, bound by the same pain, will always be tethered to their daughters and each other.

[1] https://www.mayoclinic.org/tests-procedures/amniocentesis/about/pac-20392914

[2] https://www.saintlukeskc.org/health-library/amniocentesis