Sudden Deaths, Broken Hearts: Prevention is Key

Bridgett Alexander was pleasantly surprised by her third pregnancy. She lost her first baby, a girl, after three months because she never moved from the fallopian tubes to the uterus. Two years later, during the 23rd week of her second pregnancy, Alexander began leaking amniotic fluid resulting in three straight months of hospitalized bed rest, until she delivered her 5-pound, 6-ounce son, Jonathan, via C-section.

By Fia Curley

"When I left, after having my baby, it was like moving out," said the 26-year-old who was also married in the hospital. "All the nurses, we knew each other by name."

Infant sleeping on back. But with Julian, things went so smoothly Alexander could hardly believe it. Instead of being hooked to machines, awaiting daily fluid checks and ultrasounds, Alexander said she was free to enjoy her pregnancy despite being diagnosed with the genetic blood disorder, thalassemia.

The happiness was short lived however. Born two years and a day after his older brother, weighing six pound two ounces, Julian died at age 3 months from Sudden Infant Death Syndrome (SIDS) on March 24, 2005.

SIDS, or Sudden Infant Death Syndrome, refers to the unexplained death of a child 12 months and younger even after a thorough investigation and autopsy has been conducted.

Julian had caught a cold about three weeks before he passed, but after breathing treatments, Alexander said the congestion and stuffiness passed and he was fine again.

"He was just a healthy baby," said the Euless, Texas resident. "He was my healthy, happy baby."

Alexander, a medical assistant at the time, said she received prenatal care during the pregnancy, kept Julian's immunizations up to date and breastfed him so that he got the nickname "Fat Fat."

It was the normal early morning routine when Julian woke Alexander at 3 a.m., expecting his feeding. Afterwards, Alexander said she played with him, changed his diaper and rocked him to sleep before placing him on his back between her and her husband. At 7:33 a.m., Alexander was startled awake as she realized she had overslept. She immediately flew into her morning routine, but it wasn't until she returned from the bathroom that she was stopped in her tracks by the look on her husband's face and his words.

Julian wasn't breathing.

"He was motionless," said Jonathan Alexander, 27. "You could just tell the life was gone out of my baby."

But Alexander said she didn't believe that. Julian was on his back with his little fists above his head like usual. She tried to rouse him, but got no response. He was stiff and cold.

"Everything just went haywire," he said. "It was pandemonium; it was crazy."

Alexander placed Julian on the floor for CPR as her husband dialed 911 and her son came to see what the commotion was about.

An hour later, Alexander's mother met the family at the hospital to hold her youngest grandson one last time.

"It was like my family's leaving me," said Deborah Williams, 50. "I can't really describe it. It's a good feeling of knowing he's at home with our Father, because there's nowhere else he's going to go he's such an angel, but it's still a feeling of I need you here, I still want you here."

Both Williams and Alexander said the death took a toll on them. Alexander said she found herself getting off work early daily just to make it to Julian's grave before the cemetery closed. And Williams, who had several relatives die annually, said she began taking medication for depression.

"His death, it's still like it was unreal," Williams said, "because two days before his death he was gibbering away on the phone with me."

What made it worse, Alexander said, is the decision she made after Julian was born to have her tubes tied.

"I hate that I did that now, but at the time it seemed like the right thing to do," she said.

Alexander, who was also dealing with depression, said she only began to forgive herself in January.

"I can't say I didn't know what SIDS was, because I did," she said. "But I thought it couldn't happen to me. It was just ignorance on my behalf. I didn't listen to what was told to me beforehand."

In 2004, about 52.8 per 100,000 children died from SIDS in the United States. In Texas, the rate is 53.2 per 100,000. Other states have it much worse: 227.9 in Mississippi, 106.4 in Louisiana, Tennessee 85.5, and 84.3 in Washington, D.C.

And while rates for infant mortality have decreased drastically in the U.S. over the past decade, they still remain disproportionately higher for minorities, particularly in the African American and American Indian/Alaska Native populations.

To inform different groups, First Candle works "to get information to those working with target populations," according to Vice President of Public Affairs Laura Reno.

"(It) is a little more successful when the messenger is someone who already works in the community," she said, "because those are the people on the front line when it comes to getting the message to the community."

First Candle equips neonatal nurses and childcare workers nationwide with up-to-date training manuals and resources about Safe Sleep, which means putting babies on their backs to sleep so they can breathe in oxygen while sleeping in a crib with a firm mattress, free of soft toys, covers and bumper pads. First Candle also stresses the importance of a tobacco-free environment for babies and not being ashamed to ask for these things from people who take care of your child.

But this can sometimes be problematic for some mothers, according to Betty Connal, a D.C. public health nurse turned executive director of SIDS Mid-Atlantic (SIDSMA).

"There's much more of a resistance to the smoke-free message," she said. "What's really hard is when we have a teen mom whose parents smoke."

Connal said she has met with many parents who cannot afford cribs, but said they would rather have their baby sleep in the bed with them so they wouldn't be bitten by rats or hurt by stray bullets.

"Some of the social situations people encounter are so horrible," Connal said, adding that even if parents want to follow the guidelines for Safe Sleep, it's hard to do so when you can't afford the crib or the prenatal care.

"It makes me crazy," Connal said. "People will get so outraged about six miners dying in a mine-and that's horrible-but every year these babies are dying."

In an effort to meet the needs of the communities, especially the minority populations, SIDSMA distributes Pack and Play cribs to needy families who can't afford to buy a crib and may not have the space for a standard version. However, the organization receives donations of regular cribs that it distributes to parents of special needs children.

Connal and the staff also visit different companies and businesses for Lunch and Learn sessions, participating in about 30 sessions a year.

The hour-long presentations are open to men and women, allow time for questions and answers and feature tips to having a healthy baby, such as preconception planning.

"A lot of women are not seeing a doctor every year, particularly younger women" Connal said. "Really the best way of having a healthy baby is to have a healthy mother and that doesn't happen overnight."

Connal suggests leading a healthy lifestyle with exercise, a proper diet and vitamins, being knowledgeable about your reproductive system and talking to your doctor before you even consider becoming pregnant, given that infant mortality rates can increase for African-American women after they turn 25.

"So many women feel like they don't want to take up their doctor's time, so they're going online and there's a lot of information, but there's a lot of misinformation." Connal said.

Through organizations like First Candle and SIDSMA, expecting parents can receive information about preventing SIDS and raising healthy children. Anyone who has experienced the loss of a child can also contact the organizations for support.

Oftentimes, parents are put in touch with people like Alexander and Williams, who speak before Congress and to parents at venues like Babies R' Us, helping to explain why it's important to have safe sleeping patterns for babies.

"I laid my son down at four in the morning, I turn around three hours later, he was gone; that's not a lot of time," Alexander said. "Now I know better and all I can do is help someone else. Being able to tell that to someone is a good feeling. To me it's therapy."

Fia Curley is a writer for the OMHRC. Comments? Email: fcurley@omhrc.gov

Infant mortality rate per 1,000 births in 2004

Age of mother African American Caucasian Hispanic Asian American American Indian/Alaskan Native

Under 20 14.2 9.6 5.0 9.8 8.8

20 to 24 13.2 6.9 4.3 5.5 8.9

25 to 29 13.3 4.9 4.5 4.3 7.7

30 to 34 13.7 4.4 4.3 4.9 7.9

35 to 39 14.1 5.2 5.3 4.4 7.4

40 to 54 16.5 7.1 8.6 8.3 --