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LUCI WELDON/The Warren Record

Amanda Cabiness, Warren County Health Department environmental health specialist, shares her story of raising a child with Costello syndrome during the health department’s World Breastfeeding Week Celebration. 

Parents would agree that raising a child involves making daily sacrifices to ensure that their son or daughter is healthy and happy, but how many would be willing to breastfeed their child for more than five years?

That is exactly what Littleton mother Amanda Cabiness did to help daughter Kati receive the nutrition she needed to grow and develop into a healthy child in spite of a rare genetic disorder. Cabiness, an environmental health specialist with the Warren County Health Department, shared her emotional story during the health department’s 2nd Annual World Breastfeeding Week Celebration on Aug. 7.

The local observance was held in conjunction with World Breastfeeding Week, Aug. 1-7.

“We hope to help normalize, help and promote breastfeeding in Warren County,” said Liz Tetley, director of Warren County’s Special Supplemental Nutrition Program for Women, Infants and Children.

Before Cabiness shared her story, other celebration participants discussed their experiences with breastfeeding and their concerns, ranging from whether their bodies would produce enough milk to whether their children would be able to nurse properly. The conversation provided reassurance to the participating women that there is nothing wrong with them if their breastfeeding experiences do not go as smoothly as they hoped.

Cabiness told the group that many mothers may be worried about the decision of whether or not to breastfeed, but said that neither choice is wrong. 

However, she added that breastfeeding was about the only choice she had to ensure Kati’s health.

Cabiness previously told the newspaper that she and husband Kris first realized that something could be wrong when Kati was born. Kati was delivered by cesarean section after Amanda was in labor for 36 hours. Kati lacked the muscle strength to move through the birth canal.

Amanda told the women last week that Kati weighed 9 pounds, 13 ounces, even though she was born two months early.

Breastfeeding was a struggle. 

“I tried everything, but she would not latch on,” Amanda said.

Kati returned to her birth weight at 4 months, but Amanda could not shake her worries that she was doing something wrong for Kati to weigh so little. Support from family helped, but some people offered little comfort.

When Kati was 6 months old, a pediatrician gave Amanda an ultimatum: place her on a feeding tube so she could receive the nutrition she needed to grow or quit work and breastfeed constantly.

Amanda was determined to do whatever it took for Kati to be healthy, so she stayed home and breastfed every 15 minutes, day and night.

Kati grew, but did not stand up until she was 11 months old. A pediatrician diagnosed her with the generic term of failure to thrive, and Amanda began taking her to specialists to find out what was wrong.

When Kati was 21 months old, she was diagnosed with Costello syndrome, a rare genetic disorder that affects many parts of the body and is characterized by delayed growth. Amanda and Kris began attending Costello’s conferences, where they talked with doctors they may not have had met otherwise.

Through everything, Amanda continued breastfeeding. Kati’s crib was connected to Amanda and Kris’ bed, making it easier to breastfeed overnight. Amanda said that she nursed while working on her second master’s degree and during trips to amusement parks.

As Kati grew older, she was able to absorb more nutrients by eating on her own. Amanda was able to return to work full-time after Kati entered pre-kindergarten at Mariam Boyd Elementary School, but continued to supplement Kati’s diet through breastfeeding.

When Kati was 5 years, 6 months and 21 days old, Amanda stopped breastfeeding because Kati was able to absorb enough nutrients on her own to support her growth and development.

Now, Kati has grown into a happy, active 7-year-old child who has endured countless medical tests and procedures.

“I don’t know how she did it except through God’s grace,” Amanda said. “She has been sedated more times than most adults.”

Amanda has no doubt that breastfeeding was the right choice to help Kati, but does not want other women to feel pressured to do the same.

“Breastfeeding is an amazing journey for you and your child,” Amanda said. “If you don’t want to, that’s OK, as long as you and your baby are happy and healthy.”