Pictured (L to R) are Terry, Ali and Mandi Hygema at their home in Leesburg. Ali marked her first birthday in July. Doctors told her parents when she was born that she was not expected to live. Photo by Jennifer Peryam, Times-Union
Pictured (L to R) are Terry, Ali and Mandi Hygema at their home in Leesburg. Ali marked her first birthday in July. Doctors told her parents when she was born that she was not expected to live. Photo by Jennifer Peryam, Times-Union

LEESBURG – Leesburg toddler Ali Hygema was not supposed to live long after birth and had to endure six surgeries since being born.
She celebrated her first birthday in July.
Ali was born July 3 at 6:05 a.m at 7 pounds, one ounce at Kosciusko Community Hospital to Mandi and Terry Hygema. She was immediately transferred to Lutheran Hospital’s intensive care unit.
She was born with trisomy 13, also called Patau syndrome, a genetic disorder in which a person has three copies of genetic material from chromosome 13 instead of the usual two copies.
“I overheard the doctors discussing the possibility of Ali having trisomy 13 so I looked it up and it was devastating news,” Terry said.
Terry said the first thing he read was that only 5 to 10 percent of those born with trisomy 13 live to celebrate their first birthday.
Mandi said even though there were several ultrasounds, they had no idea of any problems in regards to her syndrome.
Terry said he was excited to hear they were having their first girl.
Ali has two brothers, Nolan and Kaeden.
When she was born at KCH she had signs of trisomy 13 and a geneticist from Fort Wayne Lutheran told her parents they need to prepare for her death.
“The doctor told us she had differences such as two extra fingers, an encephalocele when her bowels grew out of her umbilical cord, a cleft palate and her eye was underdeveloped,” Mandi said.
Her head was smaller than normal and her feet were malformed. She also had jaundice.
“When the doctor mentioned Ali’s extra fingers I thought he was kidding,” Terry said.
Mandi said she felt like her world was ending.
“I had to be by her side, so six hours after giving birth I was discharged from KCH and my husband drove us to Lutheran,” Mandi said.
Tests were done and it came back positive for Trisomy 13.
She was on oxygen to help her breathe and had an IV.
She was at Lutheran Hospital for two weeks and was not able to come home until she was eating from a bottle.
“We’ve had to call 911 several times and she’s been transported to KCH, Lutheran and Riley on several occasions for seizures because she would stop breathing completely,” Mandi said.
She has had six surgeries including an omphalocele repair, her cataracts removed,  persistent fetal vasculature removal, an ear tube put in her right ear and a tracheostomy put in, which is an opening surgically created through the neck into the trachea (windpipe) to allow direct access to the breathing tube. She has a gastrostomy tube in her stomach to help her eat because she can’t have anything by mouth or she will aspirate it.
Currently she can only see light out of her left eye, and nothing out of the right eye  because it is prosthetic. She also is severly hard of hearing.
“We love to hold her and play with her so she knows we are all here,” Mandi said.
She goes to doctor’s appointments at Riley Hospital For Children and sees doctors in Warsaw, Fort Wayne and Indianapolis.
“We call her our miracle baby. Usually when you read the words trisomy 13, you read incompatible with life because those with the disorder usually die, but I feel she is totally compatible with life and she brings joy to so many people,” Mandi said.
Mandi said if anyone in the world knows they are loved, her daughter does.
Ali can’t crawl or sit up by herself, but Mandi said she is thankful she gets to hold her daughter every day.
Terry works at SmokerCraft, New Paris, and Mandi is a stay-at-home mom. Her baby daughter has a registered nurse, Ann Musser from Homepoint Healthcare in Fort Wayne, who comes to their home Mondays through Fridays to assist in caring for Ali.
“It saddens me to know she will never be able to see the beautiful country, hear amazing music or experience life as I have,” Terry said. “We have no idea what her life expectancy will be. We are just enjoying each day that God gives us with her.”