Helping Families of Critically Ill Babies to Bear Up : * Parent-to-Parent counselors lead them through the terms and technology, and lend an ear when needed.

Natalie Carpenter’s son, Jacob, was supposed to come into the world today, but he arrived seven weeks early in such a fragile state that he went directly from the womb to life-support machines.

There wasn’t even time for his mother to hold him.

As Carpenter recuperated from the Cesarean section, watching the other mothers in the maternity ward with their newborns made it even more agonizing for her to be without her son, who was fighting for his life at another hospital.

It would be four days before Carpenter, 23, would be able to see her third child, and two weeks before she would hold him for the first time.

When Carpenter first visited Jacob in the neonatal intensive care unit at Children’s Hospital of Orange County, she felt lost in a world of sophisticated technology and foreign medical terms.

“I felt helpless because I couldn’t do anything for him,” she says.

But with the help of a CHOC support group for parents of critically ill babies, she quickly became comfortable enough to touch and talk to her son in the midst of machines, tubes and wires as the medical team did its part to bring him through the developmental stages that should have taken place in the womb.

Carpenter’s first contact with the Parent-to-Parent support group was a detailed handbook designed to make the intensive care unit less intimidating by explaining medical technology and terms. It also aims to help parents feel less alone by acknowledging their emotional distress. For example, one passage reads:

“When a baby is rushed to the (neonatal intensive care unit) soon after its birth, parents may feel detached from the baby. It is sometimes hard for the mother to believe she really is a mother until she can get to the NICU and see, touch and talk to her baby.

“At the same time, most parents agonize over the separation. They were planning on bringing their baby home just like everyone else, and going home with empty arms to a waiting nursery is a strong emotional blow.”

Just when Carpenter was feeling the full impact of that blow, she received a call from one of the Parent-to-Parent volunteer counselors, all of whom are “graduates” whose babies have been out of the intensive care unit for at least six months.

Gail Hair, 29, knew exactly what Carpenter was going through. Three years ago, she gave birth to twins who were 11 weeks premature. Each weighed less than three pounds at birth and, they, like Jacob, had to be hooked up to respirators until their lungs were strong enough for the babies to breathe on their own. One spent two months, the other, 10 weeks, at CHOC. Today, they’re tall for their age, and Hair says those who don’t know the twins were born prematurely would never guess.

That was just what Carpenter needed to hear when she first talked to Hair, in a phone conversation a week after Jacob’s birth. Hair had been helped by a parent counselor when her boys were in crisis, and she knew Carpenter’s biggest fears even before they were voiced.

“You wait for that phone call every night that says, ‘Get down here; your child probably won’t make it through the night,’ ” says Hair, who lives in San Clemente. “They make progress, and then they regress. It’s an ongoing battle. You get so high and then so low.”

Hair helped Carpenter understand how Jacob would be weaned from the respirator as his lungs became stronger, and she was able to offer reassurance when Carpenter admitted feeling it was somehow her fault that she’d given birth too soon.

They also talked about the physical exhaustion that made it difficult for Carpenter to recover from childbirth and establish a bond with Jacob--and still give her other children, ages 4 and 1, the attention they needed.

Carpenter says it was especially helpful to be able to express her grief over not being able to hold her son immediately after his birth. The feeling of emptiness she had when she went from the hospital to her home in Irvine without Jacob is “beyond comprehension” to those who have not experienced it, she says.

Hair was able to share not only Carpenter’s grief, but also her joy when Jacob was sent home last week--and then the letdown when he became feverish and had to return to the hospital.

Fortunately, Jacob was soon released again, and on Sunday he was well enough to be moved to Texas, where the Carpenters have family.

Dottie Andrews wishes that the kind of support Carpenter and Hair received when their babies were in intensive care had been available to her 13 years ago. Andrews didn’t come up with the idea to start Parent-to-Parent until after her daughter, Megan, had already been released from CHOC.

Megan was born three weeks late with severe breathing and circulatory problems that kept her hospitalized for the first month of her life.

During that time, Andrews says, it was especially difficult for her and her husband to be around well-meaning friends and relatives who said things such as: “Everything’s going to be OK. If this baby dies, you can have another one.”

“Nobody knows what to say or how to act,” Andrews explains. “I really wanted to talk to another mom who understood what I was feeling. Everyone wants the perfect Gerber baby, and when that doesn’t happen, there are a lot of conflicts.

“You want the medical guys to do everything possible for this baby, and then you think, ‘If they do everything possible, what kind of baby am I going to have?’ The only people who truly understand are other parents, and it’s real comforting to know that you’re not alone.”

Andrews needed that reassurance even after her daughter was released from the hospital, she said, because then she had to face the developmental delays that came after Megan made her physical recovery.

Although Megan, who will soon celebrate her 13th birthday, is a bright, healthy girl today, there was a lot of uncertainty about her future when she left the hospital, Andrews says.

Many of the other parents who attended the first meeting of the Parent-to-Parent support group in 1979 were also feeling anxiety about what would come next, and they supported each other as they reached out to parents who were just entering the frightening world of neonatal intensive care.

Among those at that first meeting was Linda Scott, who became coordinator of the Parent-to-Parent support group in 1988, when Andrews moved on to her current position as director of Community Services for the March of Dimes’ Orange County chapter.

Like Andrews, Scott today has a healthy teen-age daughter, but Missy, the youngest of four, was in the CHOC neonatal intensive care unit for three months after being born prematurely.

Scott had previously lost a son born three months early, and she had also had three miscarriages. When she went into labor with Missy, she says, “I lost all hope.”

The doctors told her that Missy had a 5% chance of surviving delivery, but the 2-pound baby was breathing when she was born, and she had the advantage of advanced technology that had not been available when Scott lost the boy.

Scott says it would have helped her to be able to talk to other mothers during that time because she and her husband were not always able to comfort each other. Like many couples, each partner had very different responses to the crisis.

Scott says men are often dealing with the stress of mounting hospital bills and the responsibilities of keeping the household running as their wives maintain a vigil at the hospital.

“I felt I should be at my baby’s bedside 24 hours a day, and my husband was more tuned into the walking and talking with the children at home,” Scott said. “The men feel the burden of the world on their shoulders.”

But thanks to the CHOC support group, parents are no longer as alone as they were when Scott and Andrews gave birth to critically ill babies.

Scott remembers one mother who was particularly grateful for that. She was a tourist from out of state, and she and her husband had just returned from a day at Disneyland when she went into labor more than two months early.

The father had to return home not long after the baby was admitted to CHOC. The mother, who could not afford to stay there on her own, ended up staying with Scott for six weeks.

Another mother who lived in Upland but who had no car stayed with Scott for three months while her baby was in intensive care at CHOC.

Scott said she took them in because she knew how it felt to be separated from a newborn barely holding onto life, and she could not have bared seeing either of those mothers being denied the opportunity to be as close to their babies in the hospital as she had been to hers.