Baby's death spurs couple's drive for medical reform

Ariah Davies Morris arrived all pink and healthy, on a springlike day last month.

Her mom and dad are elated and relieved, but they worry that others will think that having Ariah settles everything, that it brings closure to their grief and frustration with a medical system that sometimes fails.

It was nearly fours years ago that the couple lost their son, Alex, who lived only a few hours after birth. The death was unexpected and, the couple believes, preventable.

“Six days after my C-section, I was shoveling dirt,” said Lisa Davies-Morris . Alex’s father, David Morris, remembers trying to hold her back from the grave, worried about her stitches, scared about losing her too.

In the days, months and years after Alex’s death, Lisa and David have become schooled in the way of medicine. They can cite medical terms and Virginia code and the way the state’s Board of Medicine disciplinary system works and how they believe it doesn’t.

They brought complaints against several doctors before the medical board: One doctor was ordered to take a class on high-risk pregnancy. Lisa sits on infant mortality prevention panels to guide and warn others. They both have been trying to meet with the governor.

The Virginia Beach couple believe that a series of medical mistakes doomed their first-born. When they tried to bring those mistakes to light, they felt shut out of a system they thought was there to help.

“This will be with us forever,” Lisa said. “This story is part of me until the day I die, but I want it to be one that’s empowering for all women and babies.”

Dangerously low levels of amniotic fluid went unremarked upon and untreated for months during Lisa’s pregnancy with Alex. Without enough fluid, his limbs became deformed. Most crucially, his lungs didn’t develop properly and he couldn’t breathe.

“I heard him cry twice,” David said, “then nothing.”

Alex was their first child together; David, a Chesapeake firefighter and artist, has two sons from a previous marriage.

Because of Lisa’s age at the time, 39, the risk of Down syndrome or other genetic abnormalities was higher. In November 2004, Lisa underwent a genetic test known as chorionic villus sampling – more commonly called a CVS – in which a needle is inserted into the placenta and tissue extracted.

The couple suspect that the procedure caused a small, steady leak of amniotic fluid.

Tests done by Lisa’s first obstetrician, Dr. Charles Wilkes, indicated oligohydramnios, or low amniotic fluid , according to medical records.

An ultrasound report in January 2005: “Amniotic fluid: oligohydramnios, AFI 4.3 cm.”

An amniotic fluid index of anything less than 5 centimeters is considered cause for concern.

“Bells should have gone off,” David Morris said.

By Lisa’s next appointment, her records were transferred to Dr. Theresa Whibley, who would be her obstetrician for the remainder of the pregnancy.

Oligohydramnios occurs in about 8 percent of pregnancies. Most often it happens when the baby is past the due date and the amniotic fluid starts leaking. The earlier it happens in a pregnancy, the poorer the prognosis.

The standard of care for mothers with oligohydramnios calls for extensive monitoring by doctors to keep the fluid levels as high as possible. Mothers are often advised to drink a lot of water and to get as much rest as possible to avoid doing anything that could exacerbate the problem.

Lisa remembers playing tennis, staying fit, believing she had a pregnancy with no problems because at every prenatal visit, the couple say, they were cheerfully told how well things were going.

In April 2005, Lisa called David at the fire station. She was about eight months pregnant with Alex.

“I could tell she was in excruciating pain,” David said. “She could hardly talk to me.”

Later it turned out that it was most likely a gall bladder attack unrelated to the pregnancy, but an ultrasound done to check on the baby showed that the amniotic fluid was now down to 0.7 centimeters.

A cesarean section was recommended. Alex would be premature and would most likely spend a few weeks at Children’s Hospital of The King’s Daughters, but he should be fine, the parents say they were told.

Whibley performed a C-section on April 14. It was immediately clear that Alex had more severe problems than being a few weeks premature .

“It took about five attempts to get an airway,” David said. “Lisa’s crying her eyes out; I’m watching what they’re doing.”

At first they were told that Alex must have had a fatal congenital condition in which his kidneys failed to form properly. That would explain the low amniotic fluid level because fetal urine is a major component of it. If that had been the case, it meant that there really was nothing that could have been done to save Alex, who couldn’t have survived without working kidneys.

But the autopsy showed no problems with the kidneys. “Then our hearts broke for the second time,” Lisa said. Were it not for the amniotic fluid, Alex could have been a healthy baby.

Lisa and David fought to have the death certificate changed to remove “renal failure” as a cause. A second one listed pulmonary hypoplasia – or underdeveloped lungs – with oligohydramnios as the underlying factor.

“It’s a very sad case that I know Lisa and her husband understandably have struggled with,” Whibley wrote in a response to an e-mail requesting an interview about the case in November. “But I hear that they are suing me and all the doctors involved with this, so I guess any response I would make would be inappropriate. Sorry.”

Though they considered it for a time , Lisa and David said they are not interested in suing. They’ve instead directed their efforts to the Board of Medicine and public officials.

“I really believe that in order to make positive changes to reduce infant mortality in the state of Virginia,” Lisa wrote to the state’s first lady, Anne Holton, in June, “both you and Governor (Timothy M.) Kaine could benefit from firsthand knowledge of what parents of infants who suffer premature deaths encounter in Virginia. Before any real changes can be made, there must be a keen understanding of the system my husband and I have been facing for over three years.”

They filed complaints with the Board of Medicine in the spring of 2006. They said it took six months, and several phone calls on their part, to get the case opened; a year and seven months to have decisions rendered.

“In our first telephone call to the Board of Medicine following the filing of our complaints, we were advised that our complaint was #27,” Lisa and David wrote in a letter to public officials called “Lessons Learned.” “Thereafter, a subsequent telephone call revealed that the priority of our complaint had dropped to #37 or thereabouts. Our next call revealed a drop in priority to #47 or thereabouts. It was at this time that we requested the intervention of a supervisor, which thereafter led to our complaints being given #1 priority.”

One of their criticisms about the Board of Medicine was that they never were able to formally testify before the board. Decisions to close their complaints were rendered without their knowing why or whether all the detailed allegations they made had been fully investigated .

In October 2007, the medical board found that Wilkes had failed to inform his patient about the low amniotic fluid level detected in the ultrasound, failed to refer her to a perinatologist for further evaluation and did not document a treatment plan.

The board ordered Wilkes to take a course on high-risk pregnancy. He did so, and in March 2008 the board said he had fulfilled its requirements.

Wilkes declined to comment for this story.

Lisa and David learned of the public finding against Wilkes after the fact.

“I keep trying to do the right thing,” Lisa said, “and I get the wrong thing back.”

In Virginia there is no legal requirement that the Board of Medicine hear personal testimony from people who make complaints.

“It’s not a vehicle for personal redress,” said Dr. William Harp, the board’s executive director.

Harp said the 18-member volunteer medical board must make legally defensible decisions that could withstand the scrutiny of the Virginia Supreme Court. There is substandard care that “doesn’t necessarily dip all the way to negligence,” he said.

Harp said he gets 50 to 75 letters a year objecting to the board’s decisions. The board consists primarily of medical doctors.

“You get letters which are pretty angry,” Harp said. “I remember one letter that said, 'You’re just a doctor’s protection racket.’ ”

Any system based on complaints made after the fact is necessarily limited, Harp said.

Ideally, you’d have a system where physicians’ offices are reviewed on a regular basis and “do whatever remediation is necessary before a patient got hurt,” Harp said. “Wouldn’t that be wonderful?”

But that would take resources and staff the board doesn’t have, he said. The board doesn’t use tax money ; its work is funded through licensing fees. It reviews about 2,000 complaints a year, which are investigated by staffers who are shared among the other health boards – such as nursing, dentistry and social work – that make up the state’s Department of Health Professions.

“How can you come up with a proactive thing that’s cost-neutral?” Harp said. “Is there a way to do that that’s feasible?”

Harp said he is legally required to maintain confidentiality about individual cases and would not talk specifically about the care surrounding Lisa’s pregnancy or why the board decided as it did.

Speaking generally, he said the board cannot make a decision based solely on a patient’s outcome.

“A small mistake can have a horrible outcome and you can have horrible mistakes” where a patient is left unharmed, Harp said.

A good doctor can make a mistake but still be a good doctor, and it doesn’t serve the public to remove that physician from practice, he said.

“Our mission is to protect the public,” Harp said. “Our mission is not to punish doctors.”

In December, Lisa, pregnant with Ariah, attended a perinatal care conference in Virginia Beach. A doctor talked about the importance of diagnosing problems prenatally, not only to increase the chances of a better outcome for the baby, but to prepare and counsel the parents even if the worst is suspected.

Lisa exhaled a disgusted laugh. She’s a social worker who, after Alex’s death, decided to specialize in grief counseling. She goes to conferences like this for that reason and to learn as much as she can about everything that should be done to make sure babies make it into the world healthy.

She and David believe that Alex’s death was preventable, but they know that even if everything had been done right after the problem was discovered, Alex still could have died.

“At least we would have known they did everything they could,” Lisa said.

When she was pregnant with Ariah, the couple did things differently. They were happy with their doctors, but they were less trusting this time around. They got the records from every visit. They made sure they knew the results of every test and what every word on every document meant.

On the last day of February, Ariah was 3 weeks old. She fit perfectly in her dad’s hand as she nestled against his chest.

It is like any happy household with a new baby. Except on the fridge, just over the newborn picture of Ariah, there is a picture of Alex at the same age. They look alike, and there was a moment early on when Lisa looked at Ariah and saw Alex in his coffin.

That also was the final day of the General Assembly session, and Lisa and David had been hoping to get a call to go to Richmond to testify about a bill that would authorize an audit of the Board of Medicine.

The bill was tabled, perhaps to be revisited next year.

Lisa and David have been at this fight for almost four years and expect many more to come. They are looking ahead to when their newborn will have children of her own.

“I don’t want her to ever walk this journey,” Lisa said shortly before Ariah was born. “She has lost a brother now. I don’t want her to have this loss.”

Nancy Young, (757) 222-5559, nancy.young@pilotonline.com