Woman with rare disease who defied odds to conceive celebrates daughter's 2nd birthday

Kimberly Lord poses for a photo with her husband, Adam, and daughter Aubree, now 2. (Courtesy Kimberly Lord)

When Kimberly Lord was a child, an orthopedic doctor told her mother that if she ever got pregnant, the stress would kill her. That’s because Lord, now 38, suffers from a rare and debilitating genetic condition that has stunted her height and progressively caused her bones to grow abnormally — an effect that has necessitated numerous corrective surgeries throughout her life.

But Lord never accepted that fate, and today, she is celebrating over two years of life for her little girl, Aubree, whom she conceived with her husband, Adam, and carried with the help of a high-risk pregnancy OB-GYN.

“She was meant to be,” Lord told Fox News of her daughter.

When Lord was 18 months old, she was diagnosed with Morquio syndrome, a metabolic disease classified by two types, A and B, and marked by a lack or deficiency of a certain enzyme. People with Morquio A, like Lord, are unable to break down long chains of sugar molecules due to inadequate levels of the enzyme galactosamine 6-sulfatase, according to the National Institutes of Health (NIH). Affected people typically start presenting symptoms —  like coarse facial features, short stature, a large head, abnormal bone development, a bell-shaped chest and a large head — when they’re between ages 1 and 3.

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Lord, who is 3 feet 9 inches tall, spent her childhood either under the knife or recovering from those surgeries to correct her abnormal bone growth. As in many similar cases, Lord’s parents were carriers for the genes linked with Morquio A, but were not aware of that fact before they gave birth to Lord and her older sister, Susan, who also has Morquio.

Despite Morquio, Lord and her sister were raised to believe in themselves and not let their physical differences limit their lives.

“My mom always taught us about seeing the positives in everything,” Lord said. “She never babied us, she never looked down on us, so to speak, because we were different. I think that definitely helped.”

Lord is now the only documented person with Morquio A to have given birth.

Finding love

Before giving birth to Aubree — who was not born with Morquio and whose torso at 2 years old is already longer than Lord’s — on Jan. 7, 2015, Lord worked as a disability advocate for nine years. She and her husband met on the dating website Plenty of Fish nearly eight years ago, and Lord recalled responding to him simply because his message was the first tasteful one she had received in a while. They saw “The Time Traveler’s Wife” on their first date.

“In the beginning, I didn’t think that it would turn into something as serious as where we’re at now,” she said. “I just thought, ‘We can have a good time and get to know each other, and it is what it is,’ but two and a half, three months into the relationship is when I thought I could be in trouble … the first thing that attracted me to him was his heart — that he looked past me as being a little person or different.”

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After the two got married in February 2013, they began discussing the possibility of growing their family. The two share three children from Adam’s previous marriage, but Lord always wanted to carry her own biological child.

Per doctors’ advice, she underwent sleep, pulmonary and heart tests to determine whether she was physically capable of carrying out even a high-risk pregnancy. Through it all, they talked and prayed.

“How do you look at your husband and say, ‘I still want to do it,’ when he loves me enough that he would not want to lose me as his wife?” Lord said. “It was a tough journey for both of us.”

Kimberly Lord made a deal with Adam: They’d try to get pregnant for a year, and if they were unsuccessful or miscarried, “it was God’s way of saying you’re a stepmom, and that is your chance to be a mom,” she said.

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At the time, Adam had low testosterone and was on a testosterone patch, which typically kills sperm counts, and Kimberly Lord was 35, meaning her chances for conceiving were already slightly reduced. But, with the odds stacked against them, they learned she was pregnant four months into trying.

“She’s a miracle child,” Lord said.

Planning for Aubree

Lord’s OB-GYN, Judy Rossiter, was “very concerned” when she first reviewed Lord’s records, but Lord’s determination helped make a healthy pregnancy possible.

“She was amazing,” Rossiter told Fox News. “She went into the pregnancy well informed; met with me twice and our anesthesiologist twice; got an echocardiogram, a sonogram of the heart; did a sleep study to see how her respiratory function was … she did all the things we asked her to do.”

Despite her previous doctors’ concern that, with a small torso, carrying a child with her normal-size organs would cause trouble breathing, Lord didn’t face that problem until the last two weeks of her pregnancy.

“We’ve learned different — that your body is amazing and that it does amazing things,” Lord said.

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In fact, Lord’s pregnancy was mostly uneventful.

“When she got pregnant, she continued to be physically active and worked till she was seven months pregnant, and that was very much Kim,” said Rossiter, who is the director of the perinatal center at the University of Maryland St. Joseph’s Medical Center.

Not even the severe morning sickness Lord endured from nine weeks until delivery fazed her.

“I was experiencing everything I had always dreamt of,” Lord said.

Doing the seemingly impossible

Rossiter planned to carry out a caesarean section before the pregnancy reached full term, but the biggest challenge she and her team would face was intubating Lord without anesthesia due to her anatomy. Prior to becoming pregnant, Lord discussed those risks with Rossiter and her team.

After administering anesthesia, doctors must be able to tilt a patient’s head back to intubate them quickly and help them breathe again, as anesthesia immediately depresses the respiratory system. But because Lord’s bone structure prevents her from turning her head too far right, left, up or down to avoid injury, she had to be awake while an ear, nose and throat specialist and anesthesiologist worked to place the tube down her throat in tandem with a high-tech intubation instrument. Lord needed to be intubated to maintain proper oxygen levels for her and her unborn baby.

“She had to suppress that gag reflex, and it was hard,” Rossiter said. “She is a champ.”

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Rossiter and the surgical team stopped intermittently throughout to allow Lord to rest, and Lord said the entire surgery lasted nearly 13 hours.

Despite a high-risk status and the early delivery at 34 weeks, the C-section was routine, Rossiter said, and although the team worried over extubating her, that stage of the delivery was also uneventful.

“She did this well because it was Kim,” Rossiter said. “I would not expect that everyone who has Morquio would do as well.”

Lord said she was never scared and that motherhood has “been nothing but joyous.”

“She completes me,” said Lord, describing Aubree. “Motherhood, having your own biological child, it’s something you can’t describe till it happens to you.”