Video: Baby frozen in time

By Sara James Correspondent
NBC News
updated 10/23/2005 7:39:56 PM ET 2005-10-23T23:39:56

Watching your children grow up is one of the pleasures of being a parent— and for Howard and Melanie Greenberg, who live in suburban Baltimore with their four daughters, the milestones and memories are countless.

Brooke is the third of the Greenberg’s children.

"She giggles, she laughs, she recognizes her mother and her father, and she loves to be tickled. She loves her sisters," says Melanie.

It all sounds rather ordinary, but for Brooke, things were never quite typical— even from the beginning when Melanie was pregnant with her.

"They checked for growth size every month. One month she would be fine, one month she would just stop and play catch up," recalls Melanie.

"Brooke was a little on the small side, but nothing abnormal," says dad Howard. "I mean you couldn’t really tell until you witnessed the birth and you saw Brooke."

A premature baby
Melanie and Howard first saw Brooke sooner than expected. She arrived one month early and weighed only 4 lbs. She was born with a problem with her hips— a rare condition called anterior hip dislocation.

"Her hips were dislocated from where they normally would be," says Dr. Lawrence Pakula, Brooke's pediatrician. "Hers were pushing forward and put her legs in a very awkward position."

Very early in her life, Brooke had to have surgery, be put in casts and lie on her back with her feet up in the air. "The hope is that this would give her much better function," says Pakula.

At this point, Howard and Melanie still thought they were going to have a normal child.

However, when Brooke was about a year old, Howard and Melanie grew more concerned. Now the worry was not Brooke’s hips, but why Brooke remained about the size of a 6-month-old. While their other daughters were growing, maturing, Brooke seemed to be frozen in time.

"She really was not growing to the rate that she should have been growing," says Howard. "I remember the doctor saying that when Brooke enters say 4th grade she’ll be like at the first grade level. We could live with that, we had no problem with that. We really did not know the road we were about to take with Brooke."

In search of answers
It was a road, that over the next few years, took the Greebergs to specialist after specialist in search of answers... in search of anything.

"They [the specialists] just said she’ll catch up. Then we went to the nutritionist, the endocrinlogoist. We tried the growth hormone," says Melanie.

There was absolutely zero change. "I mean she did not put on an ounce or she did not grow an inch," says Howard. "That’s when I knew there was a problem."

When you look at photographs of Brooke, she appears virtually unchanged. Even her mother has trouble sometimes recognizing how old Brooke is in snapshots.

About four years ago, when "Dateline" first met Brooke, she was still the size of a six month old,weighing just 13 lbs. , 27 inches long. And remarkably, Tiny Brooke was 8 years old. The family still had no explanation.

"We started hearing the word maybe she has 'Syndrome X' which is an unknown syndrome," says Melanie. "That was the first time after the growth hormone didn’t work that the doctor brought that up into our minds and it seemed like the thing to label Brooke— unknown 'Syndrome X.'"

The Greenbergs made many vistis to nearby Johns Hopkins Children’s Center, and even took Brooke to New York’s Mount Sinai hospital, looking for clues to their daughter’s condition.

"Even the geneticists were perplexed," recalls Pakula. "They could not find any abnormalities in her chromosomes." The Greenberg’s pediatrician consulted with specialists, looked for references in medical literature, but came up with nothing.

"No one had ever seen anyone quite like Brooke," she concluded.

Complicated medical conditions
And it wasn’t just Brooke’s inablity to grow. She also began developing serious medical conditions. During the first few years of her life, she was able to eat. She later developed stomach problems and had to be fed through a feeding pump. She also had respiratory problems, was frequently hospitalized, and even suffered a stroke.

"There was a point there where they prepared us for her to die and that’s happened actually several times," says Howard.

"When you have to go to the funeral home and pick out a casket, or go to the store and pick out the last outfit… it’s like a rollercoaster ride, mentally and physically," says Melanie.

Somehow, Brooke pulled through everytime.

Today, Brooke remains exactly the same size, despite the fact that she’s now 12 ½ years old. Her health remains precarious. She spent much of this past winter sick with respiratory problems and recently was hospitalized. The Greenbergs now have a nurse help them care for Brooke.

Still, they try to keep life as normal as possible.

Brooke attends a school for special needs children, even though her mental ability is that of a six month old.

Brooke can’t walk or speak, but manages to get around by crawling. She even lets her thoughts be known.

"She’s very aware," says Melanie. "She’s just another one of the girls in the family here. Packaged a little differently, but she’s Brooke. She’s her own little person."

She also knows when she’s not the center of attention. Three years after Brooke was born, the Greenbergs decided to have another baby. Melanie was monitored carefully and after an uneventful pregnancy, she gave birth to a healthy baby girl. Everyone was happy— except  Brooke.

"She was jealous just like a normal child," says Howard. "She would get fussy, start to cry a little bit, want to be held, that type of thing."

A little older sister
The youngest of the Greenberg’s children, Carly, now 9 years old, knows Brooke is technically her older sister, but understands that a family with a 12-year-old who’s still a baby — is just  different.

"It feels kind of strange," says Carly. "She’s older than me but she’s smaller than me. And I actually feel like I am her older sister."

The whole family helps with Brooke, accepts her for who she is, and for now, has given up looking for answers.

"When we did 'Dateline' before, nobody came forth that 'we have a case just like this,'" says Melanie, who had hoped that the publicity would provide her with some answers. "We had no doctors give us a cure. So we faced reality and we just said, 'She’s here for a reason, she is fine in our eyes the way she is.'"

With no diagnosis, the Greenbergs do not know what Brooke’s future holds... but they take nothing for granted.

"Our 12 years has been a journey, a journey that as each day goes becomes more unique," says Melanie.

"She’s just a miracle. Just an angel," says her father.

Melanie adds, "We just hope she’s happy every day."

© 2013 NBCNews.com  Reprints

Discuss:

Discussion comments

,

Most active discussions

  1. votes comments
  2. votes comments
  3. votes comments
  4. votes comments