Nursing Mom Suffers from Rare Condition that Fractures Bones

Ultima Espino sneezed. Just a simple sneeze, while happily in mom mode with her toddler and 3-month-old sons. Then intense pain hit. “It felt like my spine was detaching from my body with electrocution running through,” she recalls in horror.

That moment led to a monthslong nightmare of agony while a team of Orlando Health doctors searched for a diagnosis.

The scariest part was not knowing what it was or if it would get better.- Ultima Espino

“The scariest part was not knowing what it was or if would get better or what the turnaround time would be,” Espino says today. Although her pain has decreased enough that she is back to work as senior director of sports partnerships at Orlando Health, she is still on the mend.

Espino, 35, has a rare condition called pregnancy- and lactation-associated osteoporosis (PLO). It causes pregnant, post-partum and breastfeeding women to lose so much bone mass that their bones, often in the spine, can break without any trauma causing it.

How Espino Learned She Has PLO

In the early days of her ordeal, Espino’s pain was “a 20, off the charts” on a scale of one to 10. She couldn’t hold her children and needed help with every personal and household task.

She went to Orlando Health Jewett Orthopedic Institute, where pain specialist Dr. Brian Braithwaite, upon reviewing MRI images of Espino’s spine, noticed four compression fractures. “He said, ‘I don’t even see this in a patient (your age) who was in a 12-car pile-up,’” Espino recalls.

Next came a battery of tests for thyroid disorders, cancer, bone density and genetic conditions, as well as a visit to Dr. Christine Jablonski, a women’s bone health specialist. When a DEXA scan showed “off the chart horrible numbers” of extremely low bone mass for someone premenopausal, says Espino, Dr. Jablonski suspected pregnancy- and lactation-associated osteoporosis, or PLO.

“I’d heard of it but never seen it before,” Dr. Jablonski says now. Soon after, the doctor heard a conference speaker address this condition, which confirmed her suspicion. “Lactation is a normal, wonderful and healthy part of pregnancy and raising children, but this is an exception,” she notes. Women with PLO lose too much of their own bone calcium while pregnant or breastfeeding.

“According to available literature, pregnancy- and lactation-associated osteoporosis only happens to four or five women out of 10,000, although that number may be underreported,” Dr. Jablonski says.

Once Dr. Jablonksi had a clear diagnosis, she gave Espino four courses of action that all needed to happen:

• Stop breastfeeding
• Take calcium and vitamin D supplements
• Start physical therapy

Espino started physical therapy five months after her initial event, and today her pain level is at a steady three or four out of 10. Her bone density has improved by a whopping 15.1 percent, meaning her bones are stronger. And she can hold her boys now, although not for as long as she’d like.

Espino has learned from online groups, with whom she shares information and support, that many women with PLO worldwide are brushed off as having normal post-partum discomfort.

“I was extremely lucky that doctors believed me immediately,” she says.

Understanding Pregnancy- and Lactation-associated Osteoporosis

When women are pregnant, give birth and breastfeed, calcium absorption increases but it also leaves their bones. It goes to the baby’s skeleton during pregnancy and, while breastfeeding, to the breast milk. It’s normal, and the body takes care of itself: It replaces the calcium you need over time.

In those who have pregnancy- and lactation-associated osteoporosis, however, the body responds differently. Their bones -- usually in the spine, most often vertebrae, but occasionally in the hip -- weaken and fracture without any obvious cause. In some cases, the pain is chronic.

So few women have this condition that it has rarely been studied. These seem to be the risk factors for pregnancy- and lactation-associated osteoporosis:

• Genetics, as in other family members have osteoporosis
• Low body mass index, meaning thin women are more at risk
• Low calcium and vitamin D levels

What To Do if This Happens To You

“Trust your gut, trust your body,” Espino urges women. “I know it sounds cliché, but you must be your own advocate. You know what’s happening in your body more than anybody else, so push to get the answers you need.”

Espino believes she has had 10 spinal fractures in total. Doctors can’t treat them, so she hasn’t had that confirmed.

With time and treatment, Ultima’s bone density should continue to improve and then stabilize,” Dr. Jablonski notes. “Although she has permanently lost height from the compression fractures, the bones will heal and we are on the right path to preventing more fractures as she gets older.”

Espino’s goal today, besides eliminating pain entirely, is to support other women with pregnancy- and lactation-associated osteoporosis. “I want to reach anyone who might find herself in any sort of postpartum pain or fear,” she says. “My runway of diagnosis was so small compared to other women’s. I don’t know how I would have made it through otherwise.”