Baby Maddie’s too-short life gives birth to parents’ mission
Farah Armstrong woke up, bustled around and got set for work. She readied her little blond 2-year-old, Sophie, for day care and drove to her obstetrician’s office for her 8 a.m. appointment. It was Jan. 30, a day just like any other for a woman in the 38th week of a pregnancy that had been textbook perfect — the 20-week ultrasound had shown a robust little girl. Her due date was Valentine’s Day.
At the appointment, Dr. Selina Lin couldn’t get a good image of the baby’s head, but she could measure the body. About 10th percentile, she said, meaning on average, 90 percent of babies would be bigger.
A little small, Lin told the mother. We should deliver now.
They agreed on a delivery the next morning. The baby’s a little small? Farah, a 32-year-old BP engineer, and her husband, Patrick, a vice president of sales for an oil-and-gas company, weren’t worried. The next day, the labor and delivery at Memorial HermannKaty went smoothly, and at 10:45 a.m. they held their sweet little girl, Madeline Leigh Armstrong, on the small side at 4 pounds, 15 ounces and 17 inches long. On a whiteboard, they had brainstormed 10 ways to spell “Madeline.”
She looked like her big
sister except, Patrick noticed, she had some kind of rash.
The staff whisked Maddie away for the standard tests. The neonatologist, Cecilia Stewart, spotted the baby from across the room. Even from there, she saw something she had seen only in textbooks. It was called, somewhat grotesquely, a blueberry muffin rash.
Right then, she knew. ‘Intelligent virus’
Gail Demmler-Harrison has spent 30 years making herself an international expert in a little-known but widespread virus called Cytomegalovirus, or CMV. A pediatric infectious-disease specialist at Texas Children’s Hospital, she speaks of CMV as if it were a criminal.
“It’s a very complex, elegant and intelligent virus,” she says. “It’s ubiquitous, and its infection is silent.”
If you are over 40, the chances are good that you harbor CMV in your body. Some 50 percent to 80 percent of 40-year-olds do, and odds are you will die peacefully without giving it a first, let alone a second, thought. Like chickenpox, CMV belongs to the herpes family and, like its cousin, it can lurk in the body for a lifetime. Symptoms tend to be mild or nonexistent.
It is transmitted through contact with bodily fluids, often something as ordinary as a toddler’s runny nose or dirty diaper, but not, say, from doorknobs or counters. Toddlers are great at spreading diseases, and they are excellent at infecting others with CMV.
Demmler-Harrison says there’s a simple blood test you can take to see if you have CMV antibodies, which would mean you have the virus. But if you test negative, there’s noth- ing to say you won’t get it tomorrow or six months from now.
And none of this, she says, means a thing unless you are pregnant. Serious infection
Stewart, the neonatologist, examined little Maddie. She saw not just the blue rash but another, like red pinpricks, called petechiae. Neither was good. A blueberry muffin rash indicates the bone marrow is not properly producing blood cells. The red dots mean a very low platelet count in the blood.
Stewart sent some of Maddie’s urine out to test for CMV and some blood to test for infection as well. The duty of talking to Farah and Patrick would fall to her.
“I was dragging my feet,” she says.
After an hour, she spoke to the parents. The rashes, the low birth weight, the inflamed liver all pointed to a serious CMV infection, she told them.
“I was not very encouraging with them,” she says.
Neither Farah nor Patrick had ever heard of CMV infection, much less the damage it can do when it is contracted in utero.
Patrick told Stewart they didn’t know for certain that this really was a CMV infection.
“This is one of the times I wish I was wrong,” Stewart said.
Maddie went to the Neonatal Intensive Care Unit and, over the next several days, underwent a battery of tests. The results showed she had the virus. Severe CMV infections can cause blindness, deafness and severe brain damage.
“It was every worst nightmare you can think of,” said Patrick.
“We were hanging on for a miracle, thinking we would get a miracle,” said Farah.
Although the rules say no one under 14 may visit in the NICU, Sophie got permission to go see her sister.
“She was proud like any big sister would be,” said her mother.
On Tuesday, Feb. 4, tiny Maddie was moved to Memorial Hermann-Memorial City for more tests.
As horrible a nightmare as this had been, the next day would be the Armstrongs’ worst day. Hearing screening
A severe infection such as Maddie’s is vanishingly rare. Of pregnant women who contract the virus (usually for the first time, though reinfection or reactivation are possible), said Demmler-Harrison, about half pass it along to the fetus. Of those fetuses, about 10 percent are severely affected, she said, and of those, about 8 percent die.
Of about 4 million babies born in the United States each year, 3,000 to 4,000 will have serious symptoms of congenital CMV, she said, calling them “the tip of the iceberg.” Another 36,000 are born with CMV with no serious complications. Of those, 15 to 20 percent will have hearing loss at some time.
The most common complication in fetuses born with CMV infection is hearing loss. DemmlerHarrison believes any baby who fails a newborn hearing screening should be tested for CMV. (A law in Utah now requires it, and Connecticut held a hearing Friday on a similar law.) Some 30 percent of babies who fail the screening have CMV, she said.
Placing such a baby on oral antiviral drugs can help stave off complications and help brain growth. There are even treatments that can help women who know they contracted CMV during pregnancy to try to ward off the worst effects, Demmler-Harrison said.
But Farah hadn’t known. How could she? Lin doesn’t recall Farah, during her pregnancy, having so much as a mild cold. Farah has come to believe that she was infected by Sophie’s saliva or urine sometime after her 20th week of pregnancy. Brain underdeveloped
By this point, the Armstrongs had tried to absorb a welter of confusing and sometimes contradictory results of tests on Maddie. Sometimes her hearing, the tests said, was fine in the right ear but gone in the left ear. Sometimes it was the reverse. The vision in her left eye was fine, but the central vision in her right eye was gone. Fine, the Armstrongs told themselves. We can deal with that.
But then came the truly terrible news. Maddie’s cerebellum, the part of the brain that controls motion, was only 10 percent developed.
“Those results were the most damning,” said Patrick. “There’s nothing you can do about the brain. It was absolutely crushing.”
If she lived, Maddie probably never would have coordinated movement.
In addition, Maddie’s liver was so badly damaged that she needed platelet transfusions. Her spleen was bad as well.
“It’s a cruel virus,” said Patrick. “It attacks critical functions and leaves you just enough that you can live.”
“We learned that she wasn’t going to have any quality of life,” said Farah. There would be no miracle for Maddie.
By coincidence, Stewart, the neonatologist, was working at Memorial Hermann-Memorial City that week.
“I look at this as a great reminder for me,” she said. “I am human and experience the same emotions as the parents. But God guides us in all decisions.”
On Friday, she had to tell the parents that Maddie would not live.
Demmler-Harrison, the CMV expert, has long been on a personal crusade to inform women about the virus. What she proposes, until some hoped-for vaccine emerges, is simple and free and completely counterintuitive.
If you are pregnant and have a toddler, or work around small children, don’t share food or drink with the child, not so much as a sippy cup. Don’t kiss the child on the lips or cheek. Kiss the top of her head. Wash your hands thoroughly after changing a diaper or wiping a toddler’s bottom.
This flies in the face of the reality of life with a regular toddler, but if the alternative is the possibility of walking in the Armstrongs’ shoes, it all makes abundant sense. Raising awareness
Maddie came home to Katy on Feb. 10, with the help of Houston Hospice’s Butterfly Team, which serves patients under age 18.
Sophie was thrilled by Maddie’s tiny hospital bracelet and her little knit hat. She liked touching her little sister’s ears. But most especially, she loved that Maddie had a pacifier — Sophie calls it a “pash” — just like hers. “Maddie! You have a pash!” she said. “I have a pash, too!”
“It was the most normal we felt,” Farah said.
On the morning of the 12th, the baby’s breathing became labored, and she died at 10 a.m. at home. Madeline Leigh Armstrong was just shy of a full 12 days on this Earth.
“We’ve cried many a tear and had many a long night,” said Patrick. “We still have our spells.”
The Armstrongs have thrown themselves into raising awareness of CMV. On the FirstGiving.org website, they have, so far, raised more than $32,000 for the nonprofit Stop CMV. They want every pregnant woman in Texas, and every new mother, to understand the dangers of CMV and the precautions women can take.
They call it Maddie’s Mission.