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Kristen Jordan Shamus – Detroit Free Press

Sophie Rassey died just days after she was born at Beaumont Hospital in Troy. Alayna Perkins will turn 7 years old this month, but needs 24-hour care; she can no longer walk, talk or feed herself.

Both girls, their parents say, were victims of medical mistakes at metro Detroit hospitals that have admitted liability but until now have refused to explain the errors that led to the tragedies or detail what steps have been taken to ensure the same blunders aren’t repeated.

Lawyers for Beaumont Health sought a court order in Sophie’s case to ensure the medical team who treated her never would have to testify about what happened the March day in 2018 when the left side of Sophie’s lung collapsed and a procedure to reinflate it with a chest tube went wrong.

‘Entitled to know … what led to the tragedy’

Alonzo Perkins adds formula into the IV bag for his sleeping daughter Alayna Perkins, 6, as her mother Elizabeth Taylor, 42, looks on in the living room of their Southfield home on Saturday, July 16, 2022. Perkins had a heart defect when she was a newborn and had to have a heart transplant when she was 5 months old. After catching a norovirus at the Detroit Medical Center, her parents had her transferred to C.S. Mott Children’s Hospital. On Dec. 2, 2016, her conditioned worsened. Her blood glucose, which wasn’t being monitored, according to her mother, was at zero causing brain damage.

The University of Michigan took similar legal action in Alayna’s case, an attempt to circumvent depositions about why her blood sugar levels weren’t checked during a December 2016 heart catheterization procedure at C.S. Mott Children’s Hospital, said the family’s attorney Brian McKeen.

“If a health care provider, or for that matter any wrongdoer … injures someone or kills someone, they can’t shield the victim’s family from discovering the details of the incident by making a tactical decision to admit liability,” McKeen said.

“The family and the public and the court and jury are entitled to know the underlying facts of what led to the tragedy.”

In July, the Michigan Supreme Court upheld Oakland Circuit Judge Rae Lee Chabot’s decision to require the Beaumont medical team involved in Sophie’s care to give depositions — and possibly some closure to her family — more than four years after the baby died.

Because the cases are so similar, the state Supreme Court’s order also will affect Alayna’s case and potentially thousands of others in Michigan in the future who seek to understand what happened when medical treatment goes wrong.

“Patients and their families just want to know why,” McKeen said. “It adds insult to injury to make the family wait this long and fight so hard. And go to these extremes, all the way to the Supreme Court, simply to have an opportunity to have their questions answered.”

New twins were progressing

Melissa and Rick Rassey were excited to become first-time parents. They were having twin girls, likely identical, the Macomb Township couple was told, because they shared a single placenta.

The Rasseys bought two cribs and double sets of everything in preparation for the arrival of their babies.

Things seemed to be going great until Melissa reached the 28th week of her pregnancy. That’s when she began to develop symptoms of HELLP Syndrome, a life-threatening form of preeclampsia. It causes red blood cells to break down, pushes up liver enzyme levels and reduces platelet levels.

On March 7, 2018, the Rasseys sought treatment at Beaumont Hospital in Troy. Doctors told Melissa they’d have to deliver the twins.

“They had to do an emergency C-section that day to take the babies out because it essentially would have been fatal for all of us if they didn’t take them out that day,” she said.

They named their daughters Lilah and Sophie Rassey. Sophie was the bigger of the two, weighing 2 pounds, 6 ounces — 2 ounces more than her twin.

Both girls were treated in the neonatal intensive care unit, and needed CPAP machines and supplemental oxygen to help their premature lungs adjust to life outside the womb.

“One of the nurses told us that they were doing everything that a 28-week-old baby is supposed to be doing,” Melissa said. “I remember them telling me that because that’s what I was telling people.”

Three days after they were born, a lobe on the left side of Sophie’s lung collapsed. A doctor told the couple that he’d need to insert a chest tube to help reinflate it.

“It was a standard procedure,” Melissa said he told them. “He’d done it a lot. So I really wasn’t that concerned at that point that there was going to be something wrong.”

The doctor came back after awhile, and told the Rasseys that Sophie was getting sicker.

“I wasn’t really sure what that meant at that point,” she said. The couple went to the neonatal intensive care unit to watch and wait.

“They were doing all the bagging and really working on her,” Melissa said. “That’s when I realized something was really wrong. … We were watching them work on her for quite a bit, and then and (the doctor) came out and said that she was getting sicker.

“When they inserted the chest tube, there was blood on the chest tube … and so he thought that they may have hit a (blood) vessel. … They thought that there was likely brain damage there and they wanted us to know they might have to transfer her to Royal Oak because … they had better equipment there to treat her.

“When he said that there was there was blood in the chest tube, I asked if he made an error, and he said it’s possible he may have made an error.

“So at this point, he knew or had a really good idea that something went wrong and that they might have made a mistake. He went in there to work on her for a little bit longer and then came back out and said there’s nothing else that they could do and that she was going to pass. So we went in there and held her at that point.”

It was the first time Melissa and Rick held their baby girl. Up until then, the nurses told them their infant girls were too fragile.

“I only had the chance to hold her when they stopped doing her life support and she was passing away,” Melissa said.

‘She should have been one of the babies that survived’

Hours after their baby died in their arms, the same doctor who’d tried to insert the chest tube visited the Rasseys.

“He said that 90% of babies survive at 28 weeks and she should have been one of the babies that survived,” Melissa said. “My husband asked again to tell him, to be straightforward, (about whether) he made an error.”

The doctor said only that it was possible, and that he’d have to wait for the autopsy to know for sure, Melissa said.

“I knew at that point something went wrong,” she said, “but they weren’t telling us what happened. He alluded to the fact that he may have made a mistake because we point blank asked him.”

More than a week later, Melissa said a different Beaumont doctor told the Rasseys what happened.

“He said that (the other doctor) put the incorrect side of a guidewire in,” she said. “He explained it like there’s a soft side and there’s a hard side of the guidewire. And instead of putting the soft side in, he put the hard side in, which caused the bleeding.”

Court documents show multiple attempts were made to insert the tube.

“A blood vessel was injured and bleeding ensued,” the documents say. “Sophie became increasingly unstable due to hypovolemia (blood loss) and her O2 saturations fell. She was administered an emergency blood transfusion and received bag-and-mask ventilation.

“Despite multiple resuscitation attempts, Sophie’s heart rate continued to drop and she was unable to be stabilized or resuscitated. The infant was pronounced dead at 12:15 p.m.”

An ‘almost unbelievable’ fatal mistake

The Rasseys were distraught.

“How does that happen?” Melissa asked. “How do you put in the wrong side? It’s like almost unbelievable that you could use a tool incorrectly like that.”

Rick agreed: “You’d think there’s procedures in place for them not to make mistakes like this. And the fact that they did in a NICU environment is truly unbelievable. … You have to be on your A game in the NICU and I just think they got too comfortable in their position, and they weren’t paying attention.”

Beaumont spokesperson Mark Geary told the Free Press that privacy laws and pending litigation “limit our ability to respond to specific questions about a particular patient’s care.”

“It is always devastating when one of our patients passes away,” Geary said. “We strive to provide family members with accurate and timely information about the circumstances surrounding a patient’s death.”

Same doctor treated surviving twin

Though her twin sister died, Lilah was still hospitalized in neonatal intensive care at Beaumont in Troy with the same medical team, including the doctor who is alleged to have inserted the guidewire the wrong way.

For 60 days after Sophie’s death, the Rasseys still had to see that doctor and trust their surviving daughter to his care.

“It was terrible,” Melissa said. “He had to round and come in and talk to me. He had to come in … and I had to speak to him.

“Further down the line, I can’t remember when … he pretty much said, ‘I’m so sorry about what happened,’ and I said, ‘I don’t want to talk to you because I think it’s your fault.’ “

They tried to have the doctor removed from Lilah’s care, Rick said, but the hospital “informed us that was a resource constraint that they needed him to rotate not only at Royal Oak but also at Troy.”

The sister she won’t know

Lilah eventually grew strong enough to go home, but her parents were left with constant reminders of the child they had lost.

They had to dismantle Sophie’s crib, put away all the clothes and other thing they’d bought for her. They coped, they said, by compartmentalizing their grief and giving all their attention to the baby who lived.

“You try to just kind of focus on Lilah and keep pushing forward, but you never forget,” Rick said.

As their daughter grows, they can’t help to think about her twin, and wonder whether their girls would have looked identical, and whether Sophie would have loved Peppa Pig and Baby Shark, playing soccer, singing and reading books like Lilah.

“Lilah is going to grow up without her twin sister,” Melissa said. “She essentially died because she became brain dead from a lack of oxygen, which means she’s suffocated. She suffered because of that. They need to be held responsible. … She didn’t get a life.

“Everything that Lilah does, Sophie would be doing. So we have a constant reminder of that. … We can’t just let them walk away. Change needs to occur so something like this is doesn’t happen to another family, and I don’t have confidence that if we didn’t take legal action that that would happen — especially based on the fact that this doctor was still doing his rounds with us still in the NICU.”

The Rasseys, both 35, still haven’t told Lilah about her twin sister. They think she’s too young to understand. But, Rick said, she sometimes looks at the picture of Sophie on the fireplace mantle.

“During Christmas, we have a stocking for Sophie, too,” he said. “Last year, Lila was starting to get it. … Over the next year, we’ll start communicating a little bit more about about her sister.”

Admission of negligence used as a shield

The Rasseys now also have a son, Jack, who turns 2 in August, and hope that in the months ahead, they may finally see Sophie’s case brought to trial.

Rick called the way the legal fight has stretched out over several years “repulsive,” and said Beaumont is using its admission of negligence as a shield to avoid depositions.

“Admission is not a satisfactory resolution to this case,” he said. “We need to know who in the room made the fatal mistake. How did it happen? And what processes can be implemented to avoid this mistake from happening to another family?

“They’re delaying the process over time. I mean, we’re at four years. Lilah is over 4 years old, and we still haven’t even deposed the defendants at this point. I think it’s ridiculous. It’s insensitive.”

A heart transplant at 5 months old

Alayna was better, her parents said, worlds better after she had a heart transplant in January 2016, when she was 5 months old.

Born with a heart condition called Ebstein’s anomaly, Elizabeth Taylor and Alonzo Perkins’ youngest child was changed in ways that allowed to dream about her future.

“We saw the power of a new heart,” said Elizabeth, 42, of Southfield. “In recovery, we saw color come back to her face, to her whole body. And at that time, we didn’t realize that our daughter didn’t have color until she got her new heart and her cheeks were rosy.”

She babbled. She crawled. She stood up and tried to walk.

“We saw her drink her own bottle, the different strides that she made at physical therapy,” Elizabeth said. “She was a regular little girl. Her dad was counting on her going to school and being able to help her pick out a dress for prom or maybe one day get married. We thought that maybe she could have our grandchildren.”

But Alayna also contracted a chronic norovirus infection, and struggled to gain weight. Her transplant surgery was done at the Detroit Medical Center, so Alayna’s parents took her to C.S. Mott Children’s Hospital at the University of Michigan for an evaluation and second opinion.

“Initially, they went through her charts and they changed her formula,” Elizabeth said. “They put her on like four or five different vitamins. … She needed something with more caloric intake so that she could gain more weight.”

Back in the hospital

Still, Alayna wasn’t gaining as much as they’d hoped.

“So they asked us if they could put her back in the hospital,” Melissa said. “We agreed, and they asked us if they could do a catheterization because they didn’t do her transplant so they had no tissue samples. We thought it sounded reasonable and we allowed them to do the catheterization.”

When their daughter underwent the procedure on Dec. 2, 2016, “she was starting to talk. She was saying ‘no’ and ‘stop.’ “

“She was really social. So we would do a lot of things with her. Like on the weekends, we would go to Great Lakes (Crossing) and kind of walk the big circle a couple times. We would go to the zoo. We were going to Belle Isle — just things so she could be outside because she’d missed a lot being in the hospital for so long.”

Cardiac catheterization is a common procedure — about 1 million are done in the U.S. each year — with a risk of serious complications below 1%, according to the Cleveland Clinic.

Alayna was among the tiny few.

McKeen, the family’s attorney, explained that children who have chronic illnesses like norovirus are vulnerable to developing hypoglycemia, or low blood sugar.

Blood glucose checks

Alayna’s blood glucose levels were checked a couple of times prior to the catheterization, and were falling, McKeen said.

“Nobody really paid much attention to that,” he said. “And then they negligently failed to follow the usual protocol of checking blood glucose during the procedure.”

Court documents show that Alayna’s blood glucose levels were checked at 7:41 a.m., nearly an hour prior to the procedure, and measured 59 mg/dL, which already is lower than normal.

It wasn’t until 2:02 p.m. that it was checked again. By then, the court documents say, her “glucose level is undetectable.”

Alonzo said her nurse first realized something was wrong when several hours passed after the procedure, but Alayna still hadn’t woken up.

“The nurse that was assigned to her asked, ‘How long was she asleep?’ And then she checked on her and she just hit the blue code button and said she was having seizures,” he said.

“I was sort of panicking but at the same time was trying to stay calm so I could see what was really going on. I didn’t even notice the extent of her seizures or for how long she’d been having them.”

‘They feared she might have some brain injury’

The next day, a doctor acknowledged that Alayna’s blood sugar fell during the procedure, Elizabeth said.

“They wanted to do a CAT scan on her because they feared that she might have some brain injury,” Elizabeth said. “That was the first time that we heard her blood sugar had dropped.”

McKeen said the hospital was using outdated equipment and should have been continuously monitoring Alayna’s sugar levels.

“Modern blood gas equipment will give you a concomitant reading of blood gas levels as well as blood sugar levels,” he said. “But they weren’t using that equipment in their cath lab at U-M at the time. They have that now.

“This baby suffered profound hypoglycemic brain damage. She had a perfectly normal brain before this and now has devastating neurologic injuries and will never walk or talk or sit up.”

When a doctor told Alayna’s parents the results of her CAT scan, “you could kind of tell that he wasn’t going to say anything good,” Elizabeth said.

“He was showing us the areas of concern, and he said that she would be severely brain damaged and that … one of the heaviest hit areas was the back of her head. … That part controls vision. So he wasn’t sure if she will be able to see anymore and he said that she would have some physical debilitation. She was still intubated. She was completely out of it.

“It was heartbreaking. And I went in the hallway and I cried.”

The University of Michigan declined to comment about what happened on the day of Alayna’s cardiac catheterization.

“Michigan Medicine does not comment on pending litigation,” said spokesperson Mary Masson.

Alayna turns 7 years old later this month, and her life is now spent mostly in the living room of the family’s Southfield home, which has been turned into a makeshift medical suite.

She has supplemental oxygen and is fed by a gastrostomy tube. She has a hospital bed, an activity chair, a wheelchair and a standing device her parents hope to use to help Alayna build strength in her legs.

“Maybe one day she could walk,” Elizabeth said. “Maybe. That probably is a long way off.

“Every day is a feat because me and Alonzo still work our full-time jobs. I’m a union worker and he is a logistics manager for a subsidiary for Costco,” she said. “So we have to bounce the responsibilities off of each other.”

Their eldest sons help lift Alayna into and out of her bed when she needs a bath or to get into the car. She weighs 56 pounds now, and is only going to only get heavier as she continues to grow.

“Her care is 24 hours,” Elizabeth said. “My children remember when she was regular and crawling and assisted walking and playing with her toys and babbling and different things like that. They remember the regular her and then they live with her now and they have a lot of questions about that.

“They have a lot of questions about why did this happen to our sister. So you have to be strong for so many people. … There are so many responsibilities that come with taking care of a disabled child.”

Depositions in the case have begun, and now, the family is starting to get more answers from the University of Michigan and the medical team who treated Alayna.

A trial is set for Oct. 31 in Washtenaw County Circuit Court before Judge Carol Kuhnke.

“Ultimately, in both cases, we were vindicated in our right to discovery and to find out what happened and to take the testimony of those responsible,” McKeen said.

“I think that is to everyone’s advantage to have the truth come out and have the sun shine on what happened.”

Contact Kristen Jordan Shamus: Follow her on Twitter @kristenshamus.