Infant, Family Battle a Rare Stroke : Kimberly, 17 Months Old, Victim of a Prenatal Ailment

Kimberly Goff will be 17 months old this week. She is a good-natured, happy, pretty baby who plays with her toys but quite obviously prefers a game of peekaboo with her dad.

She has learned to propel herself to her parents and playthings by rolling over and over on the floor, but she cannot walk yet. Indeed, only now is she showing signs of learning to crawl.

Concealed Tubes

Her delicately flowered little dress and ruffled pink panties hide the tracheal tube that lets her breathe and the gastrotomy tube in her stomach through which she is fed. She requires frequent suctioning to remove fluid from the “trach.”

Kimmie Goff suffered a stroke in her mother’s womb four to six weeks before birth, a medical anomaly so rare that doctors do not know its incidence, according to Dr. Jaime Goldfarb, a Panorama City Kaiser Permanente pediatrician who is a member of the team of physicians caring for the baby.

“The trouble started right after birth,” Goldfarb said, adding that no problems were apparent in utero. “She had a problem breathing and being fed. She could not use her vocal chords because of problems with the pharynx and larynx, an area that was not functioning. Her food would spill into her lungs and she would aspirate.

‘A Normal Baby Otherwise’

“She was a normal baby otherwise. She was a full-term baby.”

Kimmie also has apnea, spells during which she stops breathing and turns blue and has to be resuscitated. At first she had as many as 50 such incidences a day; now that is down to five, “unless she has a bad day with teeth or something,” said her mother, Barbara Goff.

Kimberly Goff, born Sept. 7, 1984, spent her first 5 1/2 months in the hospital. Barbara and Dennis Goff came from their home in Canyon Country daily to visit their baby at Kaiser in Panorama City. Then, last February, with a battery of sophisticated medical equipment, including a monitor that warns them when she stops breathing, and the services of a spectrum of doctors, nurses, therapists and a psychosocial support system, the Goffs took their daughter home.

There she began to make slow progress.

“Having her at home has been terrific for her,” said Barbara Goff, 37. “In the hospital she could not move her head. . . .

“She was 7 months old before she could hold her head up, and she had been at home six months before she could get on her tummy. She doesn’t sit yet and she doesn’t walk. But she laughs and smiles and waves bye-bye. She can’t talk because of the trach (tube) but once she pulled it out and cried and scared us to death--we had never heard her cry before.

“In the very beginning they (the doctors) didn’t have much hope for her. When she came home she really bloomed. Once she understands something, she has it.”

With that, Kimberly proved the point with an active game of peekaboo with her father, who spoke of the adjustments the baby had to make on leaving the hospital.

“She had never seen a tree before she was 6 months old,” said Dennis Goff, 36, a civilian employee for the California Air National Guard. “She had not seen daylight or a house. The dog’s barking scared her when she first came home. And she didn’t know what darkness was; there was always a light on in the hospital so they could see to care for her.”

Since she first came home, Kimmie has had to return to the hospital for treatment of pneumonia, the latest a 21-day stay that began late New Year’s Eve. In that emergency, the Goffs called on Dennis’ brother, Randy, to care for their 3-year-old son Timmy, as he has on other occasions.

“My brother has been a lot of help, especially with Timmy,” Goff said.

Arranging Respite Care

When the Goffs took Kimberly home, Kaiser social worker Judith McAdoo was able to arrange some respite care, at first 16 hours a month through the Rossi Fund, then 24 hours through the North Valley Regional Center for the Developmentally Disabled, a state agency. The Goffs use the respite care--usually by a nurse who cared for Kimberly in the hospital--for grocery shopping, outings with Timmy, an occasional dinner out.

They also use respite help to arrange physicians’ appointments--Kimberly sees a neurologist, surgeon, ear, nose and throat specialist and a developmental doctor in addition to her pediatrician. Barbara Goff cannot drive alone “because I never know when she is going to stop breathing.” When that happens, Kimmie needs resuscitation immediately.

Social worker McAdoo sought help from California Children’s Services to pay for the “thousands and thousands of dollars worth of equipment” needed to enable Kimberly to go home.

Nurses and Therapists

She also worked with the Visiting Nurse Assn. to send nurses to teach the Goffs how to care for Kimberly at home. In addition, the VNA, reimbursed through Kaiser’s insurance program, provides a physical therapist, Nancy Briley, and an occupational therapist, Raj Popat-Bakhda, to work with Kimmie twice a week each.

“At first we worked with head control. Now we’re working with sitting balance,” Briley said.

“Before her recent hospitalization, Kimmie was just about to crawl,” Popat-Bakhda said. “We’re going back to working on that now. I’m also trying to teach her to swallow but there are a lot of restrictions because of the trach. I can’t go as far as I’d like to because the doctors are concerned about food getting into her lungs, and of course I respect that.

“She has made consistent progress. Since she was hospitalized she is weaker, but the outlook is very cheerful. The way she is progressing is hopeful.”

All expressed their admiration for the Goffs’ devotion to their daughter--and the expertise they have acquired in caring for her.

‘New and Encouraging’

“Whenever Barbara gets discouraged, Kimmie does something (new and encouraging) the next day,” Briley said.

Jayne Lawson and Mary Koon, both RNs, have worked with the Goffs and Kimberly at home. Lawson commented on Dennis Goff’s finding a better way to fit the gastrotomy tube in Kimmie’s stomach by cutting a Playtex nipple to fit instead of using tape, which was irritating the baby’s skin, to keep the tube in place.

“Mrs. Goff had seen an article somewhere and Mr. Goff read it and adapted the idea,” Lawson said.

The nurses originally visited the Goffs twice a week, then once a week. Now, Mary Koon said, “I don’t think we’ll go back unless Barbara needs us.”

Pediatrician Jaime Goldfarb detailed the medical detective work it took to unravel the mystery of Kimberly’s problems at birth.

The first step was to see why the baby could not handle her own saliva. An anatomical defect was suspected; no abnormality was found.

“We did a Sonogram of the head,” Goldfarb said. “The CAT (brain) scan showed a lack of development of the right part of the cerebellum. The diagnosis then was made that it was a congenital interuterine vascular lesion. We found a lack of development of the right part of the cerebellum and the brain stem; the vascular lesion prevented development of muscular activity.

“To survive, she needed a tracheotomy and gastrotomy.”

Goldfarb estimated that it will take a year or a year and a half more of studies to evaluate Kimberly’s condition and prognosis. While in the hospital, last month she had an EEG (brain wave test) and “we will do magnetic resonance imaging, a relatively new technique to examine the brain,” Goldfarb said.

Motoring to Catch Up

“She functions a little behind. Motorwise at 15 months she was like an 8- to 9-month-old,” Goldfarb said. “She has no speech, but socially she is about at her age level. She has an excellent weight. She is normal in every other respect.

“IQ? It is impossible to tell at this age. . . . We have no magic to restore the undeveloped brain. We hope that other areas of the brain will take over the function of the absent part of the brain.

“Nobody knows how often this happens--and we really don’t know why it does.”

Goldfarb added his to the already unanimous praise of Barbara and Dennis Goff in caring for their baby. “The parents are doing a fantastic job at home,” he said. “They know what to do, how to do it and when, and they do it with much calm.

“If this baby is making it, it’s because of them.”

Despite the demanding care that Kimberly requires, Barbara and Dennis Goff say it is easier to have her at home: “We can have a family life again.” They take care to give Timmy individual attention, and they allow Timmy to participate in certain aspects of “his baby’s” care.

The Goffs follow up on the physical and occupational therapy prescribed by the Visiting Nurse Assn. specialists, even though it is often difficult.

“We have to make her do things (so she will learn and develop physically),” said Barbara Goff. “It’s hard, because you feel sorry for her.”

Surprisingly, finances have been a relatively minor problem to the Goffs, largely because of the combination of aid from Kaiser, California Children’s Services and the Regional Center. That, despite the fact that, in Dennis Goff’s words, “By the time she left the hospital, they estimated her bill at around 1 million bucks.”

Helpful Neighbors

Most difficult for Barbara is the confinement: “I can’t run out and get a loaf of bread.” But neighbors, she said, have been exceptionally helpful with errands, moral support and keeping an eye on Timmy.

Dennis Goff flopped on the floor to play with his daughter, a chubby-cheeked, bright-eyed baby.

“We know from her CAT scan that she has some brain damage but we don’t know how much,” he said. Asked the medical experts’ prognosis on both Kimberly’s physical and mental conditions, he answered: “All they’ll say is ‘Wait and see.’ ”

Barbara Goff spoke of having wondered at how other parents dealt with children with physical and developmental problems.

“I would wonder how they could care for their children,” she said. “We see other kids running around, and that hurts. But you have to take what you get dealt.

“I don’t know how you can do it--but it’s your baby. “